Being weak

by Hilla Duka - View comments

Img_3046

Five days in to the third treatment, and this time is definitely worse than the ones before. Day three I couldn’t do anything. I mean absolutely nothing. All day was spent lying down, sleeping on and off, while nausea and pain and uncomfortableness rolled over me in waves. Breathing was a task that had to be managed. On those days, it’s hard to find anything to be grateful for, other than when evening comes and I get to go to sleep and soon it’ll be another day. Being weak is not one of my stronger points, so this is a bit of a learning curve.

Little mr big man now...

Still life goes on around me, even when I’m not really participating in it. Milo has started training for school, so for three days now he’s been heading off in the morning, together with Ilir, to get to know his new teachers and the school. He’s been kind of nervous about it - it’s a big step - but calmed down as we talked about what a good situation he’s got going for him: two older brothers in school, who’ll always have his back. We were joking about how no one was going to dare to be mean to him (which was his major concern) with two fierce brothers around, and gradually the nerves receded, and now he’s really happy and proud to be starting school. I’m sad that I’m missing it, but at the same time grateful that I am at least here when he comes home, and get to hear about his day and what he’s learnt and done. I filled out his papers for school and his schedule, and under “Anything else we should know about?” I filled in “Milo is still not speaking clearly”, then as an afterthought, I wrote, “Also, his mother is suffering from breast cancer, stage four”. Well, yes, maybe they needed to know about that too...

 

Most people are going back to work now, and it’s making it harder to pretend that I’m just on a really long, weird holiday. I miss my job, I miss the people there. I miss being normal. I feel like I look and behave more and more as a cancer patient, no longer strong enough to go for a proper walk, my head bald, and now my eyebrows and eyelashes are thinning out as well. I used to have hair down to my waist, thick eyebrows and long eyelashes. I used to at least be able to dress up and put on a pair of heels and still pass for decent-looking. Now, all I am is cancer-looking. That’s ok, and I’m really trying to not focus on that, but it’s harder than you think to let go, even of small stuff like that. Then add to that the effect of chemo brain, where my once so organised brain is no longer really working the same way, and I’m constantly in a haze of chemo fogs… I do feel in some ways as if I miss myself. I’m still grateful that I am here, but I wish I was more me. I try to focus on the fact that this too will pass, but as I’ve treatments lined up until February, it’s not like it will pass any time soon. And then there’s always the question of what comes after...

 

So, I focus on the shorter goals. Right now, it’s just getting past this first week of third treatment. Once that’s over, I should feel better again, more like myself. Then it’s managing no four and five, and then, it’s the big October checkup, halfway through the cycle of treatments. It’s the first real indicator of how the chemo is working, how much of the tumours are left. Even though it means a new bone marrow biopsy (not pleasant), it’ll be good to know how my body’s doing, to really be able to see that we’re making progress!


Celebrating and commemorating

by Hilla Duka - View comments

Img_5203_fotor

My lovely little Milo - not so little anymore, is turning six today, so obviously we have major reason for celebrating! He’s still not speaking clearly, and the baby curls still fall in lovely little ringlets around his shoulders and down his back. His amazingly long and curly eyelashes hit nearly upon his eyebrows, and when he smiles, my heart misses a beat. He’s funny and charming and impossibly headstrong, and clever and inventive as well. He’s at that stage where he’s still a bit of a small boy, and at the same time growing into a big boy with big ideas.  I’m so unbelievably proud of him - of all my boys of course, but today is Milo’s day.

 

Yesterday would have been my grandmother’s birthday, she would have been 93 but passed away five years ago. I don’t mark her day of passing, but her birthday instead. I was very close to her, though I probably felt closer to her than she did to me - after all she had many other grandchildren, but my other grandparents were in Israel and I didn’t see them often or talk to them often. Being with grandmother was a refuge from everyday life. I loved the freedom of being with her, she just accepted me the way I was, and it  was a simple and respectful togetherness - I accepted that there were things she wouldn’t talk to me about, and she did me the same turn. Instead, she taught me cooking, baking, sewing and crocheting. And while we worked, she told me little stories from her childhood, that became little treasures for me. I’d learnt not to ask myself, as there was no knowing what she wanted to share and not, but whenever she would share a small bit, I sat listening with rapt attention, savoring every word. I need to write those stories down for the kids for the future.

 

Even when I was quite young, I don’t think I could have been more than ten, my grandmother started talking about her impending death. Not in a morbid way at all, I think she was just trying to prepare me for a time when she wouldn’t be there. It was just small things, like going for a stroll in the spring and her wondering if she would be here to see next spring. After all, she’d already said goodbye to most of her siblings, so wondering would be natural I suppose. The last time we spoke before she died, she told me “It’s quite alright, I’m more than willing to go now”. When my kids went through the phase of worrying about death, that’s what I told them. “People go when it’s time for them to go - when they’re ready” I hope that’s true, because then I’ll be around for a long time. I’m not anywhere near ready to go, not any time soon! I want to raise my kids, see them grow up into teenagers and adolescents and grown ups, find their person and maybe have kids of their own. I want to grow old.

 

Today, I’m so thankful that I get to be here for Milo’s sixth birthday! I had my third treatment yesterday, so I don’t have tons of energy, but I’m here, and that’s enough. I can cuddle him up, pour kisses on him and touch is soft curls. I can tell him I love him and how proud I am of him, and I get the pleasure of seeing him opening his gifts, hopefully being delighted with them. I get to hear him play with his brothers. All of these things I’m grateful for. Six years ago, he was a healthy, sturdy and absolutely brand new person, and I did as all new parents do - counted his toes and fingers, touched his little button nose and his impossibly soft skin, stared into his blue eyes, thinking he was absolute perfection, and how lucky I was to get to be his mother. That’s what I’m thinking about today - actually what I think about most days now - how lucky I am to get to be their mother.

 

Married

by Hilla Duka - View comments

Wedded

Yesterday, on a high overlooking the entire city, I married my best friend, the steadfast rock who's always been there for me, the love of my life, and the father of my children. In a simple ceremony marked only by love and respect, with family and beloved, supportive friends around us, we became husband and wife, and I know that this we will remain for all of my days. 

I'm so grateful to everyone who took time to come and celebrate with us, making it exactly as special and still relaxed as I had hoped. It was an amazing day. And to my friend Cattis, without whom all of these ideas about getting married would still just remain ideas. When I found out about the cancer, Ilir asked me to marry him. When we started planning, all we could really come up with was that we would like a small ceremony, in a very relaxed way, having some champagne with our loved ones. Since I can't plan far in advance as I have no way of knowing how I will feel in six or so months, we knew that it would have to be short notice. This meant we couldn't simply book the next available time at the registry office, and as I am a non believing Jew and Ilir is a non believing Muslim, finding someone prepared to marry us seemed more than difficult. Until Cattis came in, found a lovely minister who didn't have a problem marrying such a religiously strange couple as us, and also promised to work around Jonathan's very harsh opinions on mentions of God or Jesus. (I think I've mentioned that before? While I'm somewhat of a religious carnivore - devouring all but believing in nothing, Jonathan has very strong opinions about especially Jesus. I think it stems from going with school to church before Christmas, where the priest told the story of Jesus as if it was fact, and Jonathan stood up, pointing fingers at the priest and calling: You can't know that's what happened, it was over two thousand years ago, YOU weren't there!) Thankfully, this very open minded minister didn't have a problem working around all of this, and Jonathan, whilst initially sceptic, soon warmed to him and played and laughed with him after the ceremony. 

My lovely friends from work read this poem, which brought tears to my eyes and joy to my heart (chemo brain is making me mushy and sentimental and emotional...):

När jag står på bergets topp

När jag går i den djupaste dal

Finns det inget på denna jord

Som jag inte kan klara av 

Om du finns hos mig

Om du tror på oss

Ge mig din hand

Med dig vid min sida

Klarar jag allt

Klarar jag allt 

När dom vänder mig ryggen

När människor blir små

När vägen är mörk

Ska jag fortsätta gå

För med dig är jag modig

Jag är den jag vill va'

Och hur det än blir nu

Är allt som det ska

Om du finns hos mig

Om du tror på oss

Ge mig din hand

Med dig vid min sida

Klarar jag allt

Klarar jag allt

And then we were done, and after some champagne we went down to find some grass and some shade and had a picnic. It was exactly the sort of simple, relaxed day I had hoped for, and though I was sad that some of my friends and loved ones couldn't make it, we toasted to absent friends, we laughed, and it was a wonderful day. I hope it will be a day the kids will always remember. I know I will. 

 

And today is my birthday, I'm turning 35. A few years ago I invented IHAD (International Hilla Appreciation Day), so my birthday is usually a day of drop-by visitors having some bubbles and toasting me and telling me how wonderful I am, rather than the cake, gifts and off-key happy birthday songs you'd normally have. Celebrations are so important. At every chance, every birthday, happy turn, achievement, at every piece of good news, we could all do with a bit more celebrating. God knows we grieve enough. 


More beads for my string

by Hilla Duka - View comments

Img_3045

On Saturday, we all mustered all our energy, weathered the heat, and packed ourselves into two cars to head for Kolmården. The trip by car is not far (probably like an hour and a half), but with three kids who are not used to travelling further than school, some breaks were needed. The kids were excited, I was apprehensive. How on earth would I have the energy to do this??? And not just the walking around, but the being around so many people, not having a comfortable place to sit, god - the fears were never-ending! 

fox at Kolmarden

tiger at kolmarden

sea lion at kolmarden

But we got through it, we saw all the animals, we rode in the funicular safari, and best of all - Jacob got to see the dolphins. He's been wishing to swim with dolphins for years, but has never actually seen them in real life. He was absolutely transfixed, watching as they swam and jumped and skidded across the water, laughing as they performed their tricks. It was magical to see! All of the kids loved the show (as inspite of myself, so did I. I normally have very strict opinions on animals being constricted to small spaces and learning tricks for the benefits of humans, but decided to put all those feelings aside for the day), loved seeing the animals and riding the little roller coaster shaped like a dolphin. 

 

It was unbelievably hot, the kids were occasionally cranky, so was I to be perfectly honest. In the end, I was too tired to take another step, as I've got a slight tendency to overdo it (ok, I'll run myself down before I can accept defeat, if I'm being very honest about it). Still, it was a lovely day, I'm so happy to have done it! Next year, I hope to go back with them. Next year... It's hard to find the right balance between making plans for the future (as is so typically human), and accepting that the only thing we have is right now, and the future is uncertain. This is true for all of us, not just those of us adjusting to life with advanced cancers, but we seem to have such a hard time remembering it.

 

The past is gone, and the future is unwritten. It took  me a long time after the diagnosis to understand this. To understand that what I was grieving was something that had already happened, and something that had never really been there in the first place. I grieved the fact that I had breast cancer as though that was something that happened when I was told about it. But the truth is, it had been happening for years without my knowing it. And I grieved the future I had planned, as though I was entitled to it. Then I got my head around it, and realised that even if I was just finding out about it, I had already been living with cancer, perhaps for years. Just because it was new to me, didn't mean that it was new. It's sort of like being cheated on - you find out after it's already happened, it's new to you and it changes the way you look at the past, but it doesn't change the past. And just the same way, the future I was imagining, was not real. It never had been. I was grieving an idea. 

 

And when the past is lost to you, and you understand that the future is unwritten and yours is not the only hand doing the writing, something changes inside you. Because all of a sudden, the only thing you truly have, is this moment. No matter how hard I fight, how determined I am to be a miracle patient, to be there for my boys, the only thing I can truly control, indeed the only thing that's actually real and not rewritten or made up of hopes and dreams, is the now. I wont make plans for the future - when it comes, if it comes, I will let it happen, grab life by the throat and make the most of it. I still plan on surviving, I still choose to remain unrealistically hopeful, but my main focus is on right now. I will enjoy the right now, I will squeeze as much as I can get from it, and when it becomes the past, I will cherish the good memories and let go of the rest. 

 

Right now, I'm sitting on my comfy chair on my beloved balcony, enjoying the breeze and the fact that it's not suffocatingly hot anymore, the kids tucked up in the sofa just inside, watching Tinkerbell, tired after a day by the pool. In a moment, I'll go in and join them, squeeze myself in next to them and cuddle them and smell their necks. And I'll enjoy the hell out of that moment as well. And what I've learned is that it's worth it to keep challenging yourself, t do things that scare you, even though you worry how your going to get through them, because you'll have a wonderful time doing it, and then you get that precious memory to keep. And if it all goes poop shaped, it will soon be in the past, and you can choose not to dwell on it! 


Milo inspecting the elephants. The baby one was cute, but the others a bit scary!


On the Safari tour high up in the trees!


At times, it was a long way down, and sitting on the lap felt safer.


Looking for lions


On the roller coaster for the second time - this time their grandfather got to take them, as my legs and my tummy were not up for another ride...


Bucket lists and expectations

by Hilla Duka - View comments

Img_2911

Once, the idea of getting old scared me. Then I reconciled myself with it - thinking it happens to everyone. Getting old is something we've come to expect, we think of living until we're ninety, or at the very least eighty, as a right, as default. The thing is, it's not. Getting old means having hit the jackpot. It's my ultimate hope and goal that I get to grow old, with my loved ones around me. Soon I'm turning 35, and truth be told, I can't know for sure or even expect to turn 40. If I do, I will most likely be the happiest, least neurotic forty year old ever! For now, I'll be happy and grateful for turning 35. For this day, and for, hopefully, tomorrow. 

 

When I turned 25 I was at such peace with my age. I was exactly where I wanted to be, everything on my bucket list neatly checked. When I was about to turn 30, I started thinking about what was on my bucket list at that point, what I wanted to have done and experienced by the time I actually turned 30. It wasn't very much or very thrilling, I wanted a change of career, to drive a forklift truck, a trip to the sun with the kids, to visit my grandmother with all three kids... Might not sound like much, but they were on my bucket list. I did some, but not all, and went quite happily into my thirties. Now I'm about to turn 35, and I don't have a bucket list anymore. I don't wish for money, a better career (I love the one I have, and hope to be able to return to it soon!), I don't need a big house or to travel to remote parts of the world. What I really wish for, is time. Time, and everyday life. Small things like making the kids breakfast, seeing them experience new things, learning, having fun... Saying good night and knowing I'll see them in the morning. Those are the things I wish for most of all, and yet they are the things that we all take for granted. The best bits of everyday life turn into little gems of memories, like beads on a strand, and I gingerly collect them; greedily asking for more.

 

My sweet friends Cattis and Cissi from work, and Cissi's husband Hasse, gave us one of those precious experiences when they offered to take all of us out on their boat. The kids were absolutely thrilled with the idea of going on a boat, visiting a small uninhabited island, roasting marshmallows and going off exploring. It was just magical and beautiful, and seing the kids so happy and excited did wonders for me. More treasured beads for me to collect - the look on my sons faces when they were allowed to try to steer the boat, jumping into the cool water, or simply sitting at the front of the boat as it cut through the water. We climbed into bed way later than their normal bed time, exhausted and sleepy and utterly content.  I'm so, so grateful!

 


So much love...

by Hilla Duka - View comments

Img_2789

Since I found out about the breast cancer, and how it spread through my body, I'm astounded at the amount of love, thoughtfulness and caring that has come my way. It's not even been two months since I received the shocking news, but I can honestly say I don't think I've ever felt so... cared about, I guess the best word is. So much of it is coming from my friends at work, which I think is truly amazing. Most people have colleagues, and a few of them they like well enough to form friendships with. I think this is especially true for Sweden, where friendships are formed in school or at least when you're young and single. At (almost) 35, and through other past events, I've lost most of, if not all, my friends from school, and the friends I made when younger I have mostly lost touch with. I don't mind, as it's part of life - you go through stuff, some people are there for you, others will back away. That's how you learn who truly matters to you. Enough to say that my "colleagues" from work are not mere co-workers, they're friends, true friends, who worry, send positive thoughts, encouraging gifts or lovely thoughtful cards that make me laugh and give me a moments respite from this new reality. 

 

In a support group for breast cancer patients (yes, I am refusing to use the word "victims" - I will not be a victim) I was shocked to read a thread on how to deal with losing your family and friends in this battle. One woman describing how her children refused contact with her anymore, and others reporting similar situations, friends who no longer get in touch, don't want to meet up, the feeling of loneliness added to the battle against the cancer. How fortunate I am in the midst of all this not to have to go through that! It's true, old friends who I thought might reach out have not, but they are not anyone I'm close to, and I don't miss them for it. It's true, my entire family on my mothers side have remained silent, but on the other hand other family members have come forward to offer sympathy, sending positive thoughts my way. Most of all, my family and friends have been there for me. My lovely friends from work who will come over with puppies for me to cuddle with, or a bottle of wine to share on my balcony when I'm too weak to go out, even starting a fundraising campaign to send me and the kids on a dream holiday and give us all a break from this tormenting reality we're now living with. The father of my children, who upon hearing the devastating news asked me to marry him. My amazing brother, who dropped everything to be there for me, to support me and help me so that I would not have to go through this without him. Who when I had to shave my head, shaved his own in support. My parents, who've not seen or spoken to each other in twelve years, burying the hatchet and making peace so that they can both be here for me and the kids. In these regards, I'm so very fortunate, and thankful for it. 

 

Today is day four after the second chemo, day three - five are I think the worse, and I do feel quite weak and tired, but am not in pain really. This time it's easier for me to accept that these days are not good days, because I know that they will pass and I will have more energy soon. The first treatment, I was reluctant to admit how weak I was, thinking it would not go over so quickly and that I had to fight more to stay strong and energetic. I see a breast cancer therapist, who helps me understand the mental aspects of receiving news like these, and how I can deal with them not to let them overtake my entire life but still find joy and happiness, and not be irreverent of life by thinking harmful thoughts or let the thoughts of death and dying consume me completely. This helps a lot. I can wake up in the morning, and be grateful for this day, even if it is one of those days when I can't do much or don't feel too well. I know that there will be laughter and cuddles and happiness even in this day, and I can be thankful for it. I still wonder "Why me???", but I also know the answer - life is a game of roulette. It could be me, it could be anyone. 

 

One question I get quite frequently, is how could it have gone so far before I found out? I'll try to answer that one as best I can. The type of breast cancer I have is called lobular breast cancer, and is the hardest to detect. Rather than growing as a lump on one side of the breast, It grows directly under the nipple, and not as a clear, hard lump, but as a softer, more weirdly shaped jellyfish of sorts. It wasn't until it reached a size of about 5 cm (though measuring it is tricky since it's not round), that I could tell there was a real difference in size compared to the other one. Even then, as I googled and tried to make sense of it, it seemed most information discarded the idea that it would be cancerous. And it took me some time to accept that it might be, and get help. I think I was in denial for about a month. I knew something was wrong, as I was so short of breath, tired, bones aching, but as I went for checkups and doctors appointments, they would claim one thing after another, asthma, some sort of viral pneumonia, or just prescribe coughing medicines. Had they taken a proper blood test, as indeed the last doctor did, they would have found the cancer. For about four months I went to different doctors, going through this routine, but in all honesty, if they would have found it four months earlier, it would probably still have been stage four. My doctor believes I've had it for one to three years, without knowing, and given the fact that I have no record of early breast cancer in my family, I had no reason to check it earlier. Also, lobular breast cancer symptoms are not covered in the self check info you find online or at the doctor's office. This is why I think of it as roulette - it's just a series of unfortunate circumstances that's lead to this...

 

I also got some questions as to what a port-a-cath looks like, so here's a quite unflattering picture of me showing my port-a-cath. The round thing is where they insert the needle, and the small tube is what transports the drugs into my blood stream. Genius!

Another question I get a lot, is why I'm being so open about this. I think for most people who know me well, it's obvious. I am very open as a person. I also don't believe it's my fault that this has happened to me, so I don't feel weighed down by guilt. And if there's a small chance that reading my ramblings would help someone else who goes through something similar, that would also make it worth it. And, lastly, it might make a difference for my kids to read one day, when they're older. So there you go. 


Chemo no 2 and good news!

by Hilla Duka - View comments

Img_2787

In the middle of all of this, we're still trying to have some kind of a summer holiday for the kids, thank goodness I bought the car so that we can go to the beach and I can come with! Milo's looking particularly grumpy in this one as he thought he'd been in enough pictures already....

 

Yesterday I went in for my second chemo treatment (2 out of 10). So far I feel better than the first time, that sort of inner vibrating feeling hasn't showed up (yet, at least) and I'm not really nauseous. The last treatment I got away with taking only the prescribed medications for side effects, and not rely on any of the in-case-meds, which I was quite happy about. I feel today, 24 hours in, that it will hopefully be the same this time. I'm quite tired, which is only to be expected in the first week, as the chemo is actually toxic and harmful not only to the cancer cells, but to all of the cells in my body, but as of yet, that's about it. Well, that and chemo-brain. Chemo brain is sort of like having the brain of someone half drunk, or at least slightly more than tipsy, but without any of the nicer effects that come with drinking, which makes it slightly unsettling. Making decisions, I'll tell you, is about as bad an idea now as when you've given birth and are high on hormones... 

 

The day before yesterday, I had my doctor's appointment, and she was more than thrilled with the results of the first treatment. It took me a while to get into my head what she was saying, I was so afraid the scintigraphy I did ten days ago (basically they filled me up with radioactive something, left it in me for a few hours and then used a huge camera to photograph every aspects of my insides to find out more about the extents of the metastases) would have shown new metastases, or something would show up that would render treatment impossible. But my doctor was thrilled that the side effects had been so slight, and couldn't feel any of the infected lymph nodes in my neck (I had two that could be felt by hand). When she examined my breast, she concluded that the tumour had been reduced from about 6cm to 4.5cm, approximately. I will have to wait until the half time exam to tell for sure, but at least this means that the chemo is working and my body is responding to it. In her words, it was the best possible outcome so far! And I started thinking, since I grieve all the bad news, I must cherish and celebrate the good news too!

 

Unfortunately, later that day my med nurse (the one who gives me the chemo) called to say that my blood count had dropped back to 95, despite the two bags of blood I received during my first chemo treatment. They don't know why, but gave me another two bags of blood this time. I feel like I'm doing fairly ok with an HB of 95, but the lowest acceptable number is around 120, and I really don't want to drop back to 70 as I had when I had to to hospital the first time, I was terribly tired and my head was spinning like mad. So once again, thank you to all the blood donors who make it possible for me to continue! It's easy I think, when pondering giving blood, to reconsider as the red tape is taxing and annoying (having to state who you've slept with, when, gender and such can feel quite invasive), but ultimately, giving blood saves lives. I know many are not permitted to do so, but if you're allowed to give blood, please at least consider it.

 

I shaved my head about a week ago, or the day after the last post, as that dramatic scene from any movie featuring a cancer patient (you know the one, in the shower when the woman stands holding out her hands covered with hair and breaks down in tears) turned out to be true. I've had quite a few people looking/ staring at my port-a-cath since I got that (basically, it's a small round, slightly heightened disc that sits under my collarbone, and is connected to a blood vessel in my neck, which is where I get the chemo and blood transfusions), and it's inevitably more staring now that I also wear a scarf all the time. I want to make a difference here between the looks that come from understanding that you're watching a person going through a really hard time and being sympathetic to that, and the looks that come from that same feeling that makes people gossip or tell tales. Those looks I loath, but the others I don't mind. I said from beginning that I would never consent to wearing a wig to make healthy people feel more ok around me, and I won't, but there are times I want to go up to those people and give them a piece of my mind. Like the mother in one of my kids class, who came up to me asking, her daughter had said my son had said in class that I have cancer, and was that true? Yes, I said, I do. Oh, she said, dumbstruck, and is it serious? Yes, I said, it's serious. Oh, she said again, then excused herself and went back to her little group of blathering mums to share the juicy piece of gossip. I was fuming, but tried very hard not to be as rude as she had been, thinking our kids do go to the same class no matter how much I despise her...

 

But there are positives as well. The day before yesterday, as I sat in the waiting room to see my doctor, another woman there struck up conversation with me (I'll just assume you all know how good I am at making small talk? That is, not at all.) and it was easy and non offensive and it really brightened my day. She was in her seventies, had been diagnosed 20 years past, and had lived until recently before it came back. She was a miracle patient of 20 years ago, when any stage of breast cancer was equal to having only a few years to live, just as I will be a miracle patient in 20 years to come. She was so positive, and sympathetic as she asked about my own situation. Living with breast cancer herself, I didn't have to explain how bad the situation is, I just said I had stage 4, was diagnosed 2 1/2 months ago, and it had spread to the skeleton. And she was sweet and sympathetic without it making me cringe - we were just both in this hell together.