Showing blog posts tagged with: milestones passed

Chapter 36, in which I stop eating, drinking and smoking

by Hilla Duka - View comments

Jonathan, Jacob and Milo - any sacrifice is worth it for them.

A year ago I stopped using any form of nicotine, I cut down my drinking drastically a month ago, and yesterday I went vegan. My 36th year has really just been about health. It’s been about  acknowledging that I need to work to survive.

 

Isn’t it weird how scared we are to talk about what we’re trying to do. “What if I fail, and then everyone will know I tried and failed!” is at least what goes on in my head. So I only talk about the things I suceed at doing. Well not anymore. This writing was always about being radically honest with myself, so here goes. Maybe I’ll fail completely and be drinking wine and eating cheese next week, but for right now, this is the truth.  

 

Almost two months ago, following two blood tests showing increasingly bad liver values, I decided to seriously cut down on my drinking. When I was new to life as a cancer patient, I remember how one of the nurses told me, “Have a drink when you feel like it, it’ll help with the chemo brain”, and so whenever I’ve felt like it, I’ve had a drink. Not like I had been drinking obsessively, but I probably had like two or three glasses of wine maybe three times a week?

 

But my liver values were consistently getting worse, and even though the oncologist claimed it was only because of my weight, and not anything I could do about it, I remembered when I was at uni and there were people who drank so much they started having liver failure, and then they’d have to stay off drinking and their liver values would improve. Maybe the same thing would happen to me to, I reasoned. Also, I’m battling fatigue, (which is way worse than it sounds - it literally means I fall asleep in like less than a minute, and there’s nothing I can do about it) and I thought not drinking would probably help with that too.

 

Because this was something I wanted to be able to continue doing if it worked, I decided not to stop drinking entirely, but cut down heavily. I would still drink half a glass of red wine on Shabbat, or on a work function/ meeting friends.

 

It’s been a little over a month, and I feel great. I can’t imagine going back to drinking the way I was in the past, even though I feel really bad I sometimes have to pour out really good wine because it’s gone bad. A small part of my brain looks on as I pour the wine out, amazed and feeling awful for the great tasting wine, but mostly I can’t imagine going back. I drink lemon water, and tea in abundance, and if I’m doing something special or feel like it, I can still have a drink, just a smaller one.

 

Besides the health benefits, which I still don’t know if I’ll see (haven’t had a blood test since i “stopped” drinking), my fatigue is easier to manage, and I feel better overall. This is the second big change I’ve made healthwise (the first being the stop-nicotine course I did, the Easy way), that I before thought I wouldn’t be able to do. Going through with it not only made me feel better and healthier, but it made me feel empowered in a situation where helplessness is the rule.

 

And the positive experiences I’ve had so far have empowered me, so much so that I’ve now decided to go vegan. I’ve accepted that because of the cancer and how far it’s progressed, I’m at a point where I fear food. I am literally afraid of food. Sugar, starch, processed, wheat - you name it, I fear it. I don't know which anti-cancer diet to trust, or if they're all nonsense. Nothing is certain, no one knows for sure if sugar, starch, wheat, meat or dairy is harmful, but it’s quite well known that vegetables in abundance is good for you. And I believe that the fear I feel at the possibility that the sugar or starch I eat is feeding the cancer in itself is dangerous for me. I’ve always wanted to go vegan, ever since I decided to not eat meat and fish (I was thirteen, so that makes it… 23 years ago?!) but I just never knew what I would eat instead, I imagined myself nibbling on a carrot or maybe treating myself to salad leaves.

 

I thought I loved yogurt and cheese too much to give it up. But then again, I used to think I loved snus to much to give it up, and then I quit and have never looked back. I used to think I needed my glass of wine after work, but now I put the kettle on and am just as happy. These experiences have empowered me to try new things that I believe may help me (or at least reduce the harm for me) in my effort to live as long as possible and as well as possible.


Six months or fourteen years

by Hilla Duka - View comments

Ilir

A lifetime ago, or at least fourteen years ago, in a desperate attempt to save a failing relationship, I planned a trip to London for valentines day, and for the occasion I wanted to book a table at my favourite restaurant. So I picked up the phone, and a man working there answered. He had an accent I couldn’t place and a deep softness to his voice, and I hung up feeling strangely overcome with emotions, only I couldn’t place them.

 

Anyway, I went on that trip, eventually broke up with my then-partner, cried my heart out and thought I would never find happiness or togetherness (in my head they were so intertwined they were practically synonyms), stayed single and learned how to do everything by myself, and it was a long time until I actually met him in real life.

 

And if someone would have told me that day when I spoke to him on phone, that years later I would marry that man, that he would be the father of my children, that he would end up taking care of me as I have gone through the hardest, most unexpected challenges of my life, that he would be the one who’s always there for me, I would have thought them mad. Sometimes he drives me crazy, but when push comes to shove, he’s home to me. Today we’ve been married for six months.

 

Life takes unexpected turns.

 

Closing the chemo chapter

by Hilla Duka - View comments

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As I am now dealing with the effects of the final chemo, I am struggling to close the chapter on this… experience. Seven months of my life have been put aside to be dealt with in little three week portions, they themselves divided into one and two week portions. One week for feeling wretched and horrible, two for recuperating - slowly getting back on my feet, staggering a bit more for each turn, and then we start anew. Ten rounds of this. It has left me crippled, humbled, horrifically changed, but so far I’m still alive.

 

I am still alive, and the tumour in my breast is gone. The metastases are probably still in my skeleton and bone marrow, and most likely they will one day start growing again. But as I've struggled to find out how to deal with that, I’ve realised that there is no way for me to prepare for the day when I’m told it’s growing again, and we have to resume treatment. It may be in three months or ten years - I have to live while I can. So I will consider this the closing of my chemo chapter, and be ready for what comes now.

 

It would be easy to think that there are only positive feelings associated with finishing chemo - and there is a certain element of success and happiness at being done with it. But there is also a lot of fear - fear and worry the cancer will start growing again once I’m no longer dosing it with toxics. I need to learn to live with that: these feelings will accompany me every step of the way for the rest of my life, and I need to find a way to make sure that I don't give them free reign and let them run my life. 

 

Now comes hormonal therapies to make my body inhospitable for the cancer. Simply put: here comes menopause. These medicines have their side effects as well, but they are hopefully less severe than chemo. And along with those medicines come the slow and hard work of getting back into some kind of shape.

 

As the metastases weaken the skeleton I have to compensate with extra muscles in my back. Also, it seems a good idea to be able to walk more than a few hundred metres before needing to rest. It will be hard work but I try to think positively and focus on how good it’s going to feel to be strong again, to be able to go for a proper walk or do a full yoga session.  During chemo I have both put on weight and lost muscles - now it’s time to deal with that!


Shana tova

by Hilla Duka - View comments

Applehoneypot6_fotor

This week was the Jewish new year, Rosh Hashanah, and though I don’t normally fuss much unless my dad’s around, this time it felt important to celebrate. It also happened to coincide with me being half way through treatments, also worth celebrating. It’s a whole new year, 5775, and I hope so much that it will be a sweet year, a year of better news, than last year. As is traditional, we dipped our apples in honey, and I might have prayed more fervently than usual for a sweet, happy year for all of us.

 

Rosh Hashanah is followed by ten days of atonement, and though I’m not religious, these days have always held a special place in my heart, mainly because they make so much sense to me. The days that follow new years is a time for reflection, looking back on the year that passed, on your actions. It’s holding yourself accountable for the mistakes you’ve made, and apologising to the people you’ve mistreated. The idea is that god enters the names of those who will live on new years, but gives people these ten days to change his decision. If you’ve atoned, repent, and done good deeds, he can still change his mind and put your name down for the year to come. Needless to say, this year the holiday holds a new meaning to me.

 

So these past few days, I’ve spent looking inwards, trying a bit harder than other times to align who I want to be with who I am, how I want to act and think and behave. I’ve changed so much in the past few months, it’s sometimes hard to even recognise myself.

 

Thankfully I’m now past the most horrific days of treatment no 5, my strength returning, my head clearing, and the nausea gone for this time. I luxuriate in the energy returning to my body, in the fact that I can do math in my head once again, and that I can follow a conversation from start to finish once more. Everybody always says it’s the small things that matters - who knew they were right? My heart fills with gratitude when I think that I will have almost two weeks of feeling this well before it’s time for my next round.

 

It seems my reaction to the chemo is different for each time, strangely enough. This time, I felt affected almost as soon as I left the hospital, my head drowsy and drugged, my body weak and toxic. Usually so far, day one and two have been fairly easy on me, but this time I was quite broken down. Day Three, the dreaded Day Three, came and went, and perhaps because I was already so affected, it didn’t seem like the worst Day Three I’ve gone through.

 

I try to take some comfort in knowing that I’m half way now - I’ve managed five treatments and I’ve another five to go. I still haven’t heard of anyone receiving as many as ten rounds of chemo, the maximum I’ve heard of are six. When I consider how much these five turns have altered me, it does leave me a bit fearful of what I’ve ahead of me. How much will the next five treatments take, how will they change me? What kind of person will I be when at last I’ve done all ten courses?

 

And as one always does at the beginning of a new year I’ve made an effort to be extra healthy. I’ve started to make super icky drinks, ones with celery, cale and beetroots and stuff in them, and I do feel like I have way more energy now than before. It might just be the fact that my blood counts are better, or maybe the drinks really do help. In any case I’ll keep drinking them, anything I can do to help my body have the best possible chance to fight. And ironically, physically I feel better now than I have all year, even way before I got the diagnosis.


One of the best things anyone told me since I found out was “Accept the diagnosis, not the prognosis”. I try to live by that, though it’s sometimes harder than other times. On the one hand, it makes perfect sense - I don’t feel like I’m sick, and I know that I’m strong, so why shouldn’t I be different? On the other hand, it’s very hard to ignore when you read how long people with my kind of cancer lives. And while on one hand you have to stay positive, you also have to get used to idea of dying, to try to wrap your head around it. It’s a balance hard to perfect, how much to believe and stay positive, and how much to accept. I’ve promised myself to try to let these thoughts be while we’re away, to simply enjoy the moment, and not think too much. I don’t know how well I’ll be able to do it, but I will at least try to only be present in the moment, to create some happy memories for all of us.


Milestones passed

by Hilla Duka - View comments

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Milo’s lost his first tooth! A very proud little man, who’s been walking around with a wriggling tooth for weeks now, wondering when it would ever come off, has now had it exchanged for a gold coin from the tooth fairy. Big milestone passed here.

 

And I’ve passed my own milestone, treatment no 4 is now working its toxic ways through my body, and the blood sample I gave the day before yesterday came back showing the highest blood count (haemoglobin), since I’ve started treatment - a staggering 112 instead of my usual 95! This meant that I didn’t need a blood transfusion, so the time in the ward was a mere two hours, the shortest so far. Though no-one seems to understand why my blood count was higher this time, everyone seems to think it’s a good thing. It’s normal to have a low blood count when going through chemo as it attacks all fast growing cells, and haemoglobin, hair, skin are all fast growing. But as I have metastases in my bone marrow my haemoglobin production is poor in itself. If I try to think positive, I think that maybe my better values come from some of the metastases being altered in their progress. Since no-one knows for sure, it seems only reasonable to think positively about it. And, very importantly, it means two more bags of blood are thankfully available to someone in more urgent need of it than me!


It’s during this cycle of treatment that we will do the CT scan and see how the progress is going, and I’m hoping this is a good sign for the news to come. I can’t say I’m not nervous about it. But the tumour in the breast is visibly smaller, and I can’t feel the lumps in my neck anymore. I don’t have such a pain in my lower back as I used to, though that is most likely because of the skeleton strengthening medicin they’re giving me. The chemo is taxing, and I often have aches in my joints, and at times parts of my body feel like someone’s been going at me with a small hammer all night… Still, this is a far cry from how awful I thought it would be! I’ve managed not to have to take any of the extra medicines they’ve prescribed for side effects, so I only take the anti-nausea meds three days after treatment. Small things to be grateful for!


Being weak

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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!


Married

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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.