Showing blog posts tagged with: chemo and other treatments

I measure it in milimetres, in minutes of love

by Hilla Duka - View comments

ridiculously lovely proper champagne

Last week ended with a planned visit to the oncologist - I will go every three months, but this was the first one since the end of chemo. Basically, it would tell us if my body's responding to the hormonal treatments, so obviously I was quite nervous. It didn't help that the doctor who did the ultrasound a week previously had complained that two of the lymph nodes in my left breast were enlarged - she had me worrying non stop for a week. But all was well, or at least as well as I can ever expect. No sign of anything growing. Those have become the words I live for, once every three months, no sign of growth.

 

 

These last three months since I finished chemo have meant big changes in my life. I'm back at work 50%, which is amazing, and something I'm really happy about. Unfortunately, my body hasn't recovered as well as I hoped that it would: my joints are stiff and my back hurts. Stairs are difficult, both up and down though for different reasons, my arms fall asleep often and I'm pretty much stuck with morphine and other pain medications every day. Basically, I thought I’d feel closer to well once I was done with chemo but it turns out “well” is as far away as it ever has been, which sucks. Thankfully I have work mates and family that are all ridiculously understanding and sweet to me, so today as my eyes teared up from pain I couldn’t cope with, my lovely husband dropped everything to come and get me, my lovely coworkers were sweet and understanding and my drugs and bed were more welcome to me than ever before.

 

 

Still, I have to repeat it to myself: it was good news. Nothing is growing now, so I have won another three months. That means another three centimetres of hair growing on my head (I’m getting quite shaggy already!) another few months of rest that my body might get stronger, more time for lovely moments with the people I care the most about. I will make plans for the summer, I will see the one year anniversary of finding out about the cancer. At the time I thought I was practically dead already, but now it’s close to a year later, and I’m still here. Altered, to the point where I sometimes don't even recognise myself, but I’m still here.

 

 

I’ve gotten quite good at being grateful for what I have, so the few words - No sign of growth - deserved a bottle of a lovely 11 year old Champagne, and toasts and laughter all day long. It might be nothing to a healthy person, but to me it is eons, it is an ocean of possibilities, it is what I will forever be asking for: It is more time.

Champagne glass

 


Being odd

by Hilla Duka - View comments

Jacob up close

By chance I happened to be at school today as one of my kids had a complete breakdown. As I soothed him, held him in my arms and helped him take deep breaths, the story unfold. Two other kids had made a drawing, of me. An exaggeratedly ugly drawing, showing me fat, with one eyelid hanging and no hair on my head. They were showing it to my son, saying how it was me and how strange I looked, and my son completely broke down.

 

My heart broke for him. Kids can be so mean, so thoughtless. How much more does he have to go through, this little man of mine, who’s already been through more than a child should have to deal with, when we already know that rougher times are ahead? Does he really have to deal with this as well?

 

I’m quite used to being the odd one out, but I’ve been spoiled in the sense that I’m not used to this affecting the kids. It’s a horrifying experience.

 

Fears and consequences

by Hilla Duka - View comments

Flowers in the hospital

The past week I’ve spent in the hospital, in the oncology part that I fear the most. Why was I there? Because I let fear take over my decisionmaking.

 

A week ago I finally gave up trying to pretend I only had acid reflux and headed to the emergency room, with what turned out to be an inflamed esophagus. A week I was there, hoping that maybe tomorrow I’ll get to go home, maybe tomorrow I could drink something, be in less pain. It was a week of no eating or drinking, anything. Of pain, fever, inflammation and infection, of longing and missing and hoping.

lovely flowers from my coworkers!

It turns out I’m allergic to one of my daily medicines, one I opted for taking as a pill every day rather than have to go in once every three weeks to get as a shot. Because I didn’t want anything that reminded me of doing chemo. My fear of chemo put me in the one place I fear the most, the oncology section.

 

Apart from how I hate being ill and stuck in a hospital (I actually went into a nervous fit when the nurse I spoke to on the phone said I would have to be committed!) it's been interesting and horrible to see how my absence has affected the kids. I saw them several times, and was even home for an afternoon, and it was subtle but a definite difference in how the kids behaved, the family feeling not really at a high. 

 

I missed the sensation of water flowing down my throat. I missed eating. I missed being home with my kids, and I missed taking pictures...At night I dreamt about snapping amazing photos, marvelling at the quality of my own pictures, at the sheer luck of being in the right place at the right time. Only to wake up and realise I never took those photos, that I was stuck in a boring and uninspiring room, staring at my own feet and a gray wall. It was a horrible week, one I hope I never have to live through again.


I hope that I will remember not to let fear rule my decisionmaking in the future, and I hope I can remember a bit of how grateful I feel right now, to be home with my kids, to be able to drink some water, eat on my own again. Truly, I'm so thankful to be home, and on the mend again!

Our cat Aidan about to leap


Phantoms

by Hilla Duka - View comments

white berries on a winter branch

If you get diagnosed with breast cancer, most likely at first your life will fall apart. It’s the nightmare news that no one wants, and all of a sudden you’re living your own and everyone elses worst nightmare. On top of that, you get scheduled for surgery, and one of your breasts will be removed. Except, if you’re a stage four, there is no removal, no radiation. I understand going through surgery must be very hard, and then you might want to have a reconstruction, and a whole new mess unfolds. But when you’re a stage four, the tumour in your breast is not the problem - at least in the doctors eyes. It’s the spread that is.

 

So you’re stuck with the breast that’s trying to kill you, not really knowing how to feel about this body part. Even within the hospital environment, breastcancer equals a removed breast, so you constantly have to point out to doctors, nurses et al, that you haven’t had surgery, that you’re terminal. Or chronic, as I prefer to think about it. And every time you have to say those words, because someone didn’t read your file properly, it chips away a little at your soul. Your cheeriness sort of slides off a bit, something raw and wounded becomes uncovered.

 

I still have my breast, though for the longest time I didn’t know how to feel about it. Inside of it was a tumour, one that had spread and was trying to kill me. This part of my body - one that had nursed my children, that I had highlighted in deep v-necks and push-up bras - was still there, only it was doing a very good job of getting rid of me. I wanted it gone, I wanted it removed, but was stuck with it. Today, the tumour is gone, but the effects of the cancer will never leave me.

 

And in some ways, still having my breast intact has made me feel as if I’m not really a breast cancer patient. I still have my breast, I’m not to go to any mammograms. On the outside, I could have any cancer.

 

I don’t think of the breast as being there. In my mind, it’s gone. If the tumour is gone then the breast is gone. Only it’s still there. Kind of the same as my right arm, that has been rendered useless by lymphedema, after so many rounds of chemo. It’s in many ways as if the arm is gone - I have to learn to write with my left hand, can’t carry anything with it, the list can go on and on. Only it’s still attached to my body, painful, covered by a compression glove and sleeve, making me look a bit like Darth Vader, and much improving my Cyborg transformation. My arm and my breast are still there, but it’s as if they’re gone. It’s like a phantom breast and a phantom arm, to go with my phantom fears.

wheel tracks in the snow

Dark and delicious

by Hilla Duka - View comments

Coffe

As I'm no longer doing chemo the doctors have put me on a whole new set of drugs, all of which have some funny side effects. An implant I get once every three months puts me in menopause (something all my guy friends cringe at when I talk about - I never realised menopause was such a taboo!) which means night sweats and mood swings that would put any teenager to shame.


Another drug, one that's meant to help strengthen my bones, I have to take in the morning on an empty stomach. Not a big problem - except that means no coffee when I wake up. Thirty excruciating minutes of waiting until I can finally have my morning fix. And I can honestly say that no drink has ever tasted better than the cup of dark, delicious instant I make the minute the timer rings and then gulf down in about three seconds. So delicious...


To wig or not to wig

by Hilla Duka - View comments

Withwig

Did you ever wonder what happened after I said I'd try the wig thing out? Well, here it is - me in the wig. Coincidentally, this is the only time I wore it. It sits on its stand in my bedroom, decorating a styrofoam head rather than mine. In some way, I'm happy I have it, but I just don't feel comfortable wearing it. I feel too much like a lie, a fake. 

 

I thought the wig would let me escape the reality of having cancer for a bit - but it turns out it runs much deeper than that. For now, I'll stay bald. Hopefully I will have time to let the hair grow out a little - even a super short pixie cut sounds good at this point. As long as it's my own hair. 

 

Edit: I realised looking at this that someone reading it might think this is how I look nowadays, more or less. It's really not. Since I have this compulsory need to not keep my blog as some kind of look-at-me-with-my-successful-life channel, but rather the not-so-popular radical honesty channel, this is what I look like most of the time:

Hilla Duka after ten rounds of chemotherapy

Milo snapped this shot of me so quickly I didn't even have time to put on my I-hate-being-photographed face. Ten rounds of chemo has left me swollen beyond belief, puffy around the eyes and with an arm that looks more like the hammer of Thor than anything human. Has about the same mobility too... No, it's not a pretty picture, but "pretty" is very much secondary to "alive"


Closing the chemo chapter

by Hilla Duka - View comments

2014-12-28_17.22.42-1

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!