Thursday, 4 September 2014

Today I am grateful.

It's been a ridiculously long time since I've blogged. Plenty has happened. 

Our beautiful little birdy turned three and seems so grown up already. 

My cancer started growing again so we stopped chemo. Which on the up side meant I could finally get a new tattoo, and at the last minute my husband decided to get a matching one. 

We got a puppy called Lady Toto, Lady Toto Tramp Peanut Butter Ears according to little birdie. 

I was accepted then rejected from a clinical trial. And then I started Kadcyla (TDM1), a fancy new drug that I have to pay just over $16,000 for.

A drug that I had no hope of being able to afford a few months ago, but thanks to some wonderful friends who organised a humble raffle, which then spawned a gofundme site, we incredibly managed to raise the full amount needed. Little birdies school even organised a disco to help raise funds too. The generosity of friends, acquaintances, and complete strangers has been so overwhelming and touching that I have often been brought to tears. There are days when I want to forget that I have cancer, days when I wish no one knew, days I wish I had something much better to talk about. Days where I'm worried about buying myself a magazine or flowers for fear of being judged as wasting money when others have donated theirs to help me. But most days I am just grateful for people's compassion, and that I am able to enjoy spending time with little birdie, our puppy, and my incredible husband, who I have had an overwhelming appreciation for lately. We have endured so much over the last seven years, but lately I feel as if it's paid off and resulted in us being stronger than ever. I am so lucky to have a husband that understands me completely, and I him. A partner in life who looks after me and little birdie and always puts us first, who knows what I need, often before I do, and who has made me a better person. Steve, I'm glad we held on, 'for this love will last forever' xx

Thursday, 8 May 2014

Some good news

I know it's been a long time since I last blogged. There's been plenty of things happening that I could have written about, and I have actually been doing plenty of writing, by hand for my little birdie, but just not on here. 

I started a life writing course at the beginning of March at the cancer support centre at my hospital, and it has been amazing. I've had a lot of support from online cancer groups since my diagnosis last year, but I hadn't been to any in real life. As expected I've enjoyed the writing part of the class, including the homework, but what I didn't expect to enjoy so much was the class itself. There is almost a 50 year age gap between myself (the youngest) and the oldest person in the class, but we have all shared so much with each other through the reading out of our own stories in class that it feels as if I have known these people for years, not weeks. We have all been affected by cancer, some as patients and others as carers of cancer patients, but that is rarely what we focus on. For me, I almost feel like I go off to group therapy each week, where I am reminded of what is important in life and what I appreciate most, and I will truly miss it when the course finishes in two weeks time. 

Since I last blogged a lot has happened cancer wise too. I have had six chemo treatments, been hospitalised twice due to my battered immune system, and had some good news. A CT scan two weeks ago confirmed that the new chemo treatment is working and the two nodes in my lung (one they hadn't been concerned about as it hadn't grown in any of my scans) have both shrunk by 10%. My oncologist was extremely happy and said he would have been pleased even if there was no change, so a reduction was great. 

I still haven't decided exactly how to process my stage IV diagnosis, so I try to keep it out of my mind and focus on the most important thing in life, my family. Right now I'm at chemo again, but this weekend we are going away for Mother's Day, along with my parents, my brother, and my sister and her family. Little birdie has been so excited for Mother's Day ever since she learnt about it at daycare last week, and has been telling me she is going to make me breakfast and that it is 'YOUR day mummy!' She also can't wait to spend the weekend away with her four cousins and neither can I. 

Monday, 10 March 2014

Tired and sore, but new treatment has finally begun.

Last Friday I was very happy to be starting my new treatment. 

First thing in the morning I had surgery to have my port put in. This means that instead of having infusions through an iv in my hand, I can have them straight through my port, which will be a relief, because after 16 infusions, my veins have become increasingly painful and uncooperative. 

Because I was so happy about having the port put in, I hadn't really thought about the procedure itself that much. I knew I'd have a local anesthetic, and a sedative, and that two incisions would be made, one about three centimetres where the port would be inserted, the other much smaller one is where the cord of the port would be connected to the vein in my neck. Well, maybe I did know about the procedure, but I hadn't thought about how sore I would feel afterwards. The procedure itself wasn't as uncomfortable as my lung biopsy, but it wasn't much more pleasant. First of all, I hardly noticed the sedation, and that lovely almost drunk feeling was what I had been looking forward to most. I almost asked for more, but didn't want to sound like a whimp. Secondly, my chest AND face were covered with a thick plastic sheet. I was lying on the bed on my back, with my head turned to the left, while the port was going in on the right side of my chest. It wasn't painful, but I could feel hot blood spill from the incisions, running up my chest and down the back of my neck. This was followed by quite a lot of pushing and prodding and scans to make sure everything was in the right place. 

In recovery I could hardly move my head and felt like the tube connecting my port with the vein in my neck was too tight. Luckily this was just due to the anesthetic and the way the dressing was taped to my neck, but the horrible feeling didn't go completely until the next morning. My husband and my dad were in recovery with me, and we had lovely chats as we always do in the hospital. My dad has never really been the type of person who talks about sad things, but somehow, with everything that has happened to me in the last year, being in the hospital makes him open up. We talked about his family and growing up in Italy. How his dad escaped being shipped off to a concentration camp during the war. I asked him if he remembered his mother at all, who had died when he was four. He told me his only memory of his mother was speaking to his Aunty after she died and saying 'I know my mummy died, but I'm not going to cry. I'm going to be brave'. Both stories I had never heard before. 

Once I was able to leave recovery we went and had a lovely lunch before having to head up to have my infusion. I was so happy to be finally starting treatment that I hadn't really looked into the new drug, Navelbine. I assumed that it was like herceptin and not actually a chemo drug because it doesn't cause hair loss. When I sat down for the infusion, I was asked if is had my bloods done yet. I told them no, I don't think I need them done, and then the nurse told me that yes, you do need your bloods taken before every chemo... Then, before the actual infusion, the nurse told me 'this is for the nausea' as she injected some fluid into my new port. That was when it really sunk in. This was chemo, and I'd be having it every two out of three weeks for the foreseeable future. I felt sick. From that moment on I'd had enough. I was sore. I couldn't move my head. I looked around the room at the other patients, all sick, all at least 20 years older than me. I wanted to cry. I could hardly sit still in my chair. I wanted to jump up and leave but I was too tired. The nurse came to speak to me about the dressing on the port and when it could be changed and removed, but I just wanted to tell her to go away, that I really didn't care right now. I got so tired that I couldn't keep my eyes open, and then all of a sudden it was all over. The infusion itself took all of 5 minutes and I was able to go home. I went home and all I wanted to do was sleep, so that's what I did. When I woke up I was sore and could see I had been bleeding, but seeing little birdie when she got home from preschool made me finally started to feel a bit better. As soon as she saw me she asked to see my new button, and told me she liked the pink antiseptic the doctors had painted on me, so much so that she asked of they could put it on my face next time too. 

At dinner time I had a sudden rush of nausea and had to race to the bathroom, but by the time I got there it was gone. It wasn't much later that I decided to go to bed. 

The next morning I woke up sore and feeling a little sick. I made my daughter her bottle and myself a tea, only to have one sip before realising my taste buds had already changed (my most hated side effect from chemo) and my tea tasted off. My husband was wonderful and spent the day taking care of my daughter so I could rest. He even let her help mow the lawn and took her swimming before going to the shops and stocking up on my favorite foods from when I last went through chemo, crackers, fetta stuffed olives, and soda water. As the day went on I felt better and better, and even managed to enjoy dinner. 

Sunday was my nephews 6th birthday party. I woke up feeling better again, but still a bit sore. When getting ready for the party I asked little birdie what she wanted to wear and she said 'my strawberry dress mummy'. I was confused and told her she doesn't have a strawberry dress, and she said 'yes I do mummy. The one with her hat'. She was referring to her Halloween costume! After I made a few other suggestions she was adamant that that was what she wanted to wear, so off we went. She was a little overwhelmed when we arrived at the party as my nephew had invited his whole class and there were 30 kids running around, but we all had a lovely day. The whole time we were there, even when my husband wasn't by my side, he was looking after me. Every now and again someone would come over with a drink he had asked them to bring me. He got me my food. He even rushed across the crowded room when someone tried to pass me my baby nephew because I'm not allowed to lift anything for a week after having my port put in. At the end of the day I was tired, but I felt good. 

This morning I woke up feeling like my old self, and I was even able to drink a cup of tea and have it taste normal. Hooray! I'm still a little sore and tired, but I'm feeling so much better knowing that the chemo side effects are only going to last a few days. I can definitely handle feeling crap for two days every week if it means I'm going to be around longer to spend time with my wonderful family, and that's all I want to do. 

Friday, 21 February 2014

Fuck you cancer

I did everything they told me. Without hesitation, without complaining, I had surgery, six rounds of chemo, five weeks of daily radiation, with a smile on my face for the most part. But apparently that wasn't enough. I've now been told my cancer has spread to my lung and I have stage four treatable, but incurable cancer. 

Just before finishing radiation last September, I was told that a small nodule had shown up in my lung on my radiation planning ct and that it was probably nothing, but that I would need to have a follow up scan in a few months to check it out and document it. Initially I planned on having the scan done earlier, but after spending every morning at the hospital for five weeks straight, I decided to wait the three months and to enjoy the break. In November I had the follow up scan but the results were inconclusive, so I was sent for a PET scan, which is a more detailed scan that essential highlights cancer. The PET scan showed that the node in question was non cancerous, but another suspicious node showed up in my lung. My oncologist said it was too small to biopsy and that we should repeat the scan again in three months to see if there were any changes. 

So two weeks ago that's exactly what I did. The following day when I saw my oncologist I was told that the node had changed. It had grown. It was cancer. At that point he was unsure what treatment plan would be best, and discussed the possibility of removing the cancer with surgery, but went on to say that that wouldn't fix the problem because I now had metastatic stage four breast cancer, and that treating the lung node locally wouldn't stop the cancer from popping up elsewhere in my body. This was treatable but incurable cancer. I would be having treatment indefinitely, which means no more babies, no reconstruction...

Since then my husband and I have been back to see my oncologist. He has decided that surgery or radiation to the lung node would do more damage than good so it won't be necessary. We spoke about the possibility of being treated by a brand new drug which isn't on the pbs yet so it would cost $14,000, but he has now decided that that isn't necessary yet. He sent me for another PET scan and finally I got some good news when the results showed there was no sign of cancer anywhere else in my body. He is sending me to see another oncologist to get a second opinion and to make sure all treatment avenues are discussed. He also wanted to have a biopsy performed on the lung node to confirm the type of cancer so he knew which drugs to use to treat it. 
On Thursday I had the biopsy. It was a little bit shit. After waiting for about two hours, I was taken in to the ct scanner to get ready for the biopsy. I had to lay, face down, on the ct bed without moving while they scanned me to locate the node. They sedated me (that part was wonderful) then gave me a local anesthetic, and proceded to put a needle in my back, between my ribs, and into my lung. They then put a smaller needle inside this one and took a few samples of the node. As soon as they finished and I was allowed to move, I started coughing up blood, and got a bleeding nose. Everyone seemed to rush to get be onto my back and then hurriedly wheeled me over to recovery where my husband joined me. My back and chest ached but I was ok. I had to stay in recovery for two hours to be monitored and was then sent for a chest X-ray to make sure my lung hadn't collapsed. 

I see my oncologist again this Thursday and will hopefully have the biopsy results which will indicate what type of drugs I will now receive. I will most likely be having weekly infusions at the hospital and eventually going into a clinical trial. 

On a happier note, little birdie started preschool last week, perfect timing hey?, and she is loving it. She seems to be keeping the teachers amused too. On her first day she wouldn't eat morning tea, telling them 'I just had honey toast. I don't need to eat now'. Then, when we dropped her off this week she told her teacher 'I had a good nap yesterday' and when her teacher said 'that must have made mummy happy' she said 'yeah. I'm her daughter'. 

Saturday, 18 January 2014

1 year today

Today marks one year since I heard the words 'it's cancer'. It doesn't feel like a whole year has gone by, but then again, thinking about before I was diagnosed with cancer seems like a lifetime ago. 

Before I was diagnosed, my husband and I had had such high hopes for 2013. We were moving into our new home (our first house), we were planning to have another baby, and then 18 days into the year I was told I had cancer. The amazing thing is that looking back, 2013 still managed to be a pretty wonderful year. Sure, there were a few lows, but many many more highs, like moving into our new house, my amazing surprise birthday weekend away, our daughters second birthday, and just day to day life with my daughter and husband. 2013 taught me that cancer is a f*cking bitch, but my family and friends are amazing!

I never in a million years thought I would be diagnosed with breast cancer, let alone at the age of 27, but it's amazing how you adapt to things and they just become part of daily life. Yes I had cancer, but life goes on. Dishes need to be washed. Nappies needed to be changed. Bills needed to be paid. I was alive, and wasn't going to let cancer take up any more of my time than necessary. 

Thinking about it yesterday, I realised that the first few days after my diagnosis are pretty much the only time I've cried about having cancer, and that was when I had to tell my family and friends. I've cried numerous times about the baby I wasn't able to have (I have only recently managed to talk about that without getting teary), I've cried for the friends that have lost their battle to this bitch if a disease, but I've hardly cried about the fact that I have cancer. I remember times while going through chemo that I looked  like uncle fester and felt like utter rubbish but I still didn't cry. Maybe I just didn't have the energy to, but I've never really been scared, or felt sorry for myself, or upset myself by thinking about what would happen if I didn't beat this. 

I'm still waiting to hear the words "cancer free", I'll be having more tests next month which I'm hoping will lead to this, but today I'm happy that I'm here and feeling healthy. 

Now its time to get back to watching 'The Wizard of Oz' with my little birdie (for the 20th time) and to hopefully not think about cancer again today. 

Monday, 28 October 2013

Feet don't fail me now

I've been trying to write a new post for the last few weeks, but after a while every attempt has ended up just saying FUCK CANCER FUCK CANCER FUCK CANCER. Health wise I'm fine, but in the last few weeks I have met with a reconstructive surgeon which was unexpectedly depressing, I found out that a friend was back in hospital and then that her breast cancer had spread to her brain, and now today I have learnt that another breast cancer friend has passed away. 

These friends are people I have only met through Instagram and Facebook. I've never met them in real life, never spoken to them on the phone, and I don't even live in the same country as any of them, but they are just as important as any of my other friends. I know some people don't understand this, or how news like this can devastate me for days, but we have a connection through this horrible disease that we just can't share with anyone else. 

Kim was the first breast cancer warrior I 'met' online, when I searched #mastectomy on Instagram. She seemed so strong and badass (a term I have never used to describe any one, but is perfect for her). Just days after getting out of hospital she had posted a picture of her drains tucked up under her top so she could go to her daughters school play. Through her I discovered a whole online community of breast cancer fighters. From their Instagram pictures I learnt more about my upcoming mastectomy, chemo, and radiation than from any of the information the doctors and nurses gave me. I was also invited to a private cancer group on Facebook which has been the most incredible resource and support for me. I knew that Kim's cancer had returned and in the last few weeks I considered asking mutual friends if they knew how she was, but I think I was too scared to find out. This morning I learnt of her passing and later today found out that she has donated her body to science and will not be having a funeral. I think this is such a beautiful, admirable, and selfless thing to do, to chose, even in death, to put others first and to be more interested in helping others instead of memorialising yourself.

Then there's my beautiful friend Mariana. A few weeks ago I discovered she was in hospital and not well. All day I kept checking back for an update before learning that her cancer had spread to her skin and lymph nodes. A few days later she wrote that her cancer was now in her brain. I was so gutted by this news that for days I could hardly think straight. The last time I tried writing this post was about a week ago and I ended up bursting into tears trying to write about her, so I'll stop here to avoid doing it again. 

As for the meeting with my reconstructive surgeon, well it seems insignificant now. Basically, the surgeon told me that the best option for someone my age is a regular implant but, because I have had radiation treatment, I'm not a candidate for this so my other two options which involve cutting skin and muscle from either my stomach or back and making a sort of patch work boob. Not ideal but today I don't particularly care. I'm still annoyed that I didn't have a bilateral mastectomy in the first place. If I had, reconstruction wouldn't be so important. I also get angry when I think about the cost of these so called 'cosmetic' procedures (over $10,000 for one, almost $30,000 for the other. And that's with Medicare and private health insurance) but as Kim once said 'as long as I'm here to bitch about it, I'm ok'

Rest In Peace Kim x

Saturday, 21 September 2013

Like being hit by a truck. Literally.

Quite often when I read or hear fellow cancer patience or survivors worrying about cancer coming back and ending their lives, I think to myself that yes, we have/had cancer and yes, it could kill us, but so could a car accident, so there's no point in wasting time worrying about it. Well, yesterday I was violently reminded of this fact when driving along the freeway, the same freeway I take every time I go to the hospital.

It was 8:15 in the morning and little birdie and I were driving to my sisters house as we do every Friday, when all of a sudden, i heard a crash and lost control of my car. I looked to my right and saw the grill of a truck a second before it hit me. As it did my head hit the window. Next I saw cars coming towards me as my car was spinning around. I remember thinking 'turn into the skid', something my dad has always told me, so that was exactly what i did. I managed to get control of the car and pulled into the emergency lane next to the median strip. I grabbed my phone, dialled emergency, and turned to see little birdie happily playing in her car seat as if nothing had happened.

I had no idea where the truck went or exactly what happened but was lucky enough that another truck driver who witnessed the whole thing pulled over immediately and ran across three lanes of traffic to make sure I was ok. He entertained little birdie while we waited for the ambulance and police and was able to tell us what he had seen. Apparently the truck had clipped my bumper, spun my car around in front of his, slammed into me and pushed my car along the freeway for 10-20 meters before I spun around away from the truck and eventually pulled over. The truck hadn't stopped or even slowed down so this all happened at 110k/hr. He couldn't believe that little birdie and I were unharmed, that my car wasn't crushed, and that i had managed to get control of the car and pull over, he even asked if i had taken a defensive driving course. He also told me that if I had put my breaks on the truck would have gone over the top of me. The whole right hand side of my car was damaged, but I was able to easily open my door and get out. The left had side, where little birdie was, was untouched. The paramedics arrived first but were concerned that we were in a dangerous spot being in the middle of the freeway so they put us in the ambulance to drive to the other side of the road where it was safer. This was the first time that little birdie got upset. She cried and said 'I don't want to go in the ambulance, I want to go to my cousins'. Soon after, the police arrived. While the paramedics checked little birdie and I out the police got a statement from the witness. Little Birdie and I were fine and the policeman came back to speak to us. He told me that from what the witness had told him we were lucky to be alive. He said he had seen a lot worse from a lot less. He organised for my car to be towed and said it was still unsafe to stay where we were so organised for the ambulance to drop us at my sisters and said he would come see me later in the day to get my statement. He also told me that they had found the driver a few suburbs away.

The police came to see me later in the day. He started to tell me that he spoke to the truck driver who seemed to be a 'good guy' with a clean driving record, before stopping himself and saying he needed to get my statement first. He asked me to tell him in my own word what had happened. Next he had some more specific questions that he had to ask me, based on the other drivers statement, which I could refuse to answer if I wished. He started asking me if I remembered seeing a red car, if i had overtaken the red car, if I remembered seeing the truck, if i had tried to over take the truck, and I began worrying that the truck driver had tried to say it was my fault. After I finished answering his questions he told me what the other driver had said. To my relief he hadn't said I had done anything wrong. He hadn't even seen my car. He told the police that he had overtaken the red car himself and shortly after had felt a small bump. He looked in his mirror to see if he had hit something but there was nothing there (that would be because my car was being pushed along in front of him), and the next time he looked in his mirror he saw my car spinning away from him. He did pull over at the end of the freeway and called the accident in, but at that point I hadn't reported it so he was told to keep driving. Because neither of us know exactly what caused the accident, and neither did the witness, he won't be charged and the police report will be inconclusive, which could effect my insurance claim but I'm not going to worry about that right now.

I've replayed the accident in my head constantly since it happened. Flashes of it are extremely vivid. The noise of the truck hitting my car. Its shiny grill coming towards me. The sound of my head hitting the window. The cars coming towards me. Then little birdies blissfully innocent face when it was all over. I may be having a pretty spectacular run of misfortune this year, cancer, the pregnancy, my husbands seizure, being hit by a fucking truck! But I'm also extremely lucky. What would have happened if I had had my window open. What if an airbag had deployed. What if i hadn't been able to gain control of the car. What if little birdie had undone her carseat belt before the accident? I have to stop myself there.

I won't know what's happening to my car until next week. It is apparently borderline so it could be written off but for now I couldn't care less. I just know that little birdie and I are extremely lucky to be sitting at home with my wonderful husband, so I'm not going to worry about anything else.

Little birdie asleep on her daddy at the end of the day