Showing blog posts tagged with: chemo and other treatments

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!


Colouring outside the lines

by Hilla Duka - View comments

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As I put on makeup this morning, I realised that I no longer have enough eyebrows to make out where they begin. So I started drawing about where I thought there ought to be eyebrows, only to realise that I looked like an idiot… It took a few tries before I thought I got it about right, and then a few checks with old photos to make sure it looked somewhat the same. I wonder if I will get better at making up eyebrows as I go along, or if this is where all that time I’m saving on my hair is going to go…

 

I hate the fact that I don’t have my eyelashes and eyebrows as I used to, as they were such a big part of how I looked, in my own eyes. I spend time each day putting on makeup, not to try to be pretty, but to try to still be me. If I’m not wearing any makeup, to me I look like just another cancer patient. But when I go about my usual routine, I look like myself, only with cancer. And if I look like just another cancer patient, then maybe I am just another cancer patient, and my odds of surviving are just the same as anyone else’s - but if I look like me, then I remember who I am, and I know that I can move mountains. I’ve done the impossible before - and I can do it again, if I just remember who I am.

 

Today I went to give my blood sample, hoping against hope (as always) that my blood count will have gone up, but not really expecting it. If it’s too low, I’ll get a blood transfusion as well as chemo tomorrow, if it’s ok (that is basically anywhere above a hundred), it’ll just be the chemo. Of course I would prefer only getting the chemo, but I’m very happy that I can get blood when I need it, it makes a huge difference, but as we’re constantly low on supplies of blood here, I feel guilty when I have to get some, thinking it’s two bags less for someone who’s having surgery or are otherwise in dire need of it…

 

It’s been harder this time round than the last, no point beating around the bush. Instead of almost two weeks of feeling well, I’ve had two weeks with various aches and pains. My back hurts every day when I wake up, the skin on the back of my hand hurts to touch, and despite my efforts not to, I still worry about the checkup in two weeks time and what it will show…. And after the awful Day Three the last time, I’m quite concerned how Monday’s going to turn out.

 

This staying at home business is also hard to get my head around. On Monday, I did nothing but stay in bed all day, then spent all evening berating myself for not having done anything with all that time. Then yesterday, I shocked myself by cleaning the house, doing some washing and actually making cup cakes for when the kids came home from school. I was so stunned I had to sit down and have a glass of wine to recover! I know those of you who know me won’t believe it, so I’m adding some picture proof here. Three different kinds of cupcakes they were - raspberry, blueberry and chocolate. I know - clearly the age of miracles has not passed, and a good thing it is for me too!

There you go - picture proof of my super productive day! 

Being weak

by Hilla Duka - View comments

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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!


So much love...

by Hilla Duka - View comments

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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

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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. 


Tying a scarf

by Hilla Duka - View comments

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My hair is coming off rather quickly now, two weeks into my first chemo, and it's a fine line between just thin haired and time-to-go-bald. I'd rather not shave it all off too early, but I'd also prefer not to be the last one to notice that it's not working any more. My guess is that if it continues like this, I'll shave the last bits off within a few days.

 

So today, as I sent the kids off with Ilir and Joel to go strawberry picking, I dedicated some time to watching YouTube clips on how to tie a chemo scarf. And trying and trying to get it right. I've had an easy enough time with the first dose of chemo, and I don't really mind losing my hair, but getting the knack of this scarves business is difficult to say the least. I'm quite adamant about not wearing a wig though, so I better get good at this. 

 

This first turn of chemo (I get a combination called FEC, which has been used for hormonal breast cancer for something like 20 years) has been pretty ok - I honestly expected to feel worse than I have. I've been nautious, but not vomiting, more like being pregnant those first few months. I've had some pains in my joints, I've been really tired (though that could still be the shock), but other than that I feel quite alright, though I'm assured it will get worse with each treatment... Still, I'm trying to stay positive about the fact that I've not had any of the really horribe side effects. 

 

One week left until my next treatment!


Not football

by Hilla Duka - View comments

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I had this post planned out in my head. It was about football. Basically, some specific and in my opinion helpful tips that would in general improve the game. It was a cheery and trying-to-be-funny post. That's not what I'm writing today. Today, it'll just be a sad and depressing rant / up-to-date since I don't feel witty or funny or anything positive right now. The tests came back, and the cancer has spread to the bone marrow and to the skeleton. I was so busy staying positive, that wasn't even an option I had considered, and it's just left me devastated, in complete and utter shock. 

 

I wake up in the morning, and the tumors in my neck hurt (a lot) and the metastases in my skeleton, mainly in my lower back, hurt (a lot). As I wake up, there is no longer that brief moment of pause when I still think everything is normal, and then it hits me that this is now my life. I wake up now, and I know it's bad. It still kicks me in the groin, but it's not the completely unexpected kick it was at first. I can't even get a massage, because apparently, everything that's good for me is also good for the cancer. I'm wondering if smoking or getting stoned (which by all accounts should count as bad for me), might kick the cancer a bit? I'd be willing to chip in, you know, for the general good and all. As it is, I can do a bit of yoga, and Ilir is making me smoothies with icky stuff like wheat grass, spirulina and such in them. 

 

My blood values went up after I had my blood transfusion, from 70 to 95, and then a few days later all the way to 99 (in spite of my body's brilliant idea that the day after the blood transfusion was the best day to have my period), so hopefully I wont need another blood transfusion before I start chemo. (Normal people have an HB of between 130-175, so all of this still counts as severely anemic.) 

 

The plan now is to start chemo next week, then do a series of hopefully ten treatments, and - fingers crossed! - watch all the tumors in my body shrink down or disappear, and then keep me on anti hormonal treatment and keep our fingers crossed that the cancer cells don't decide to start growing again. Which they will at one point, but my plan is also to stay extremely positive that some kind of wonder cure that can kill skeletal metastases will develop, if I can just keep it together that long. The thing is, no matter how much I try to focus on this positive image, my mind keeps returning to the much less happy scenario of well... I'm sure you get the picture. 

 

It hurts so bad that my kids will have to watch me be ill, that they need to watch me be weak and worry about me. So far, I've told them I'm sick and that the illness is called cancer. I've told them that I'm not working right now, and that I'll never be completely well again. I so, so, so much don't want to have to tell them any more than that. We know that the cancer is hormone receptive, which is at least one good thing in the midst of a million bad ones, as it gives a better chance of the chemo working. Still, the fact that it's in my bone marrow and in my skeleton means what it means. 

 

I hate that I have to wait for treatment. I hate that first I had to wait one week for a conference, which turned out to be just a meeting, since they don't see any point in surgery, and now I have to wait another week and a half, during which the cancer is spreading and wreaking havoc in my body. I know that I'll be unwell when the treatment starts, but I'd rather have that than this wait. I need to fight, and right now I'm just holding my breath. 

 

I haven't had the energy to reply to all of the wonderfully kind comments, texts, messages that you've all sent me, but I really, really appreciate them. Thank you all of my sweet colleagues and friends and family members from far away who've taken the time to write! I miss normality, I miss work, I miss my life. It's so hard to comprehend, that a few weeks ago I was a bit concerned about a weirdness in my breast, and annoyed as hell that I was so out of shape and often got sick. It's just a few weeks ago, but it's another life, and I miss it badly.

 

Now, my best positive thought is starting chemo and then being able to see how the larger tumors are shrinking. 

 

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