Showing blog posts tagged with: life and other questions

So much love...

by Hilla Duka - View comments


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


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. 

Early days

by Hilla Duka - View comments


Well, the days follow each other, even if it's no longer the well-known weel tracks of before-the-diagnosis. I wake up in the morning, and for a short, blissful second, I don't remember the nightmare that has become my life, I don't remember that my life is at the stakes. And then it hits me. The force of that knowledge is now, a week after finding out, somewhat less. Now, it's just like being punched in the stomach by a boxer. I take a lot of pills, pills that help me stay calm, pills that help me sleep. It's ironic that even though that realisation of what has become reality is so forceful, sleep is still my number one preferred escape mechanism. Also, I'm still anemic (clever body choosing to have my period the day after my blood transfusion!) which makes me sleep a lot. My brother jokes that I'm like a puppy, wanting to do stuff all the time and then I go 'Oh, I need to sleep now' and I do, even if it's only for twenty minutes. 


We've had to tell the kids teachers, and they're talking about cancer and treatments in class. This morning Jonathan asked me if I would lose my hair from the treatment. I told him I would, but that I planned on cutting it short first, so it wouldn't feel like such a big deal. I haven't told them, if all goes to plan I'll lose my breasts as well. At this point, I don't even know when we can start to consider surgery, as the tumor in my right breast is too large to operate on, so we need to do some serious chemo to shrink it first. 


The day before yesterday, I had a double bone marrow biopsy. I say a double as we started out on one side of the hip, and then as the doctor despite her very best efforts couldn't drill down deep enough, we switched sides and did the same thing to the other side. I'll not say it hurt like hell, it only did when the doctor came at it a bit wrong and pain shot down my leg. Apart from that, it felt very strange having my pelvic move through no conscious thought of my own or, to me it seemed, no outward touch. Ilir and Joel were there to help me get through it, each holding on to one hand, and each looking quite pale and queasy as the procedure went on. But we go through it, and if it could only be good news (i.e. no metastases in the bone marrow) then Yay! Yesterday I went to the gynecologist as the CT scan had detected some changes to the ovaries, but they turned out to be just my usual PCOS, and was not something to be alarmed by. Also, I went to get the last lymph node, basically at the groin, punctuated and sent of for testing. If everything now tested could come back without any trace of cancer, I have a shot. 


This last week, so many kind people have reached out, offering condolences or just cursing at cancer - thank you so much! It all matters greatly, and I feel so empowered to know you're with me. I will get through this, because I don't have a choice. I have three wonderful children who need me in their lives, and who I want to be there for, and I have great people in my life that I love so dearly, and not continuing on with them is just not something I will even contemplate. Right, this was supposed to be a short update on how I'm handling waiting for more information and waiting to start chemo, but I guess it grew... Now, I'm going to tuck myself into a bath, and enjoy a freakishly coloured fruit smoothie (most likely dark green as Ilir insists on putting Spirulina into everything...)

Some news

by Hilla Duka - View comments


I'm writing this post, to let you know what's going on right now. After this, I'll maybe write, but not just casually as before. Life takes unexpected turns, and mine has taken a new one. 


So, three days ago, I went for a checkup at my doctor's, to see if I could get some clarity into what has been going on lately with me. For two or three months, I've been tired, and coughing, and lately I found two lumps on my neck. To make matters worse, I knew I had a lump in my breast, though I kept telling myself that I was sure it was harmless and would go away. It didn't and so I booked an appointment to check it up in a few weeks, but honestly didn't connect the other symptoms to that lump. I got a bit of a scare when the doctor seemed to think that they were connected. She ordered a few blood tests, which I went to take the next morning. I didn't think much of it, since she'd told me I'd not hear anything for about two weeks. As I was leaving for lunch with a friend, the doctor called me on the phone, telling me my blood values were really low, and that I needed to go to the emergency to get a blood transfusion. At this point, I felt like I was in a Kafka book. I actually did go to lunch with my friend, and in hindsight I'm glad, because that was probably my last good meal for a long time. 


They ran some more tests at the hospital, and I accidentally got to see the paper faxed (!) over from my usual doctor's. "High suspicion of malignity", it said. That was the first time I understood I probably had cancer, that at the very least, things were really serious. That night ended with me having two bags of blood. The next day, I got to see a doctor, who checked the lumps on my neck, and my breast. Thanks to her, they did a punctuation of the lumps on my neck, and they turned out to be malign. The also did a mammogram, and a biopsy on one of the lymph nodes in the breast. Basically, they think it's breast cancer that's spread to the lymph nodes. 


I will know for sure Monday in a week, but that's over ten days away. Right now, I'm climbing the walls, wondering what kind of chance I've got to fight this - best case, worse case etc. All I know is that I will fight with every bit of energy I've got, to stay alive, to stay with my kids and with Ilir. Writing this, Milo has climbed into bed next to me, his little arms touching mine, the beauty of his body so close to mine. I would do anything to stay here with them. I will do anything to stay here with them. 


I have cancer. I will fight. That's all I know right now.