Thursday, 24 January 2013: I’m 3 weeks into my new treatment plan. I’ve now had 3 rounds of the new chemo, Taxol, and also 1 round of Herceptin and the trial drug or placebo. The weekly Taxol chemo is definitely much easier to handle than the 3 weekly AC chemo. I feel much more like myself. There are definitely still side effects and some may not even present themselves until down the track a bit more. I have to watch out for pins and needles in my hands and feet – it’s called Neuropathy. I was just speaking with a lady beside me who is going through cancer for a second time. She had Taxol 6 years ago and still has pins and needles in her feet. You may not want to hear about some of my symptoms but if I’m to be totally honest on this blog then I’ve got to at least make some mention of what’s been bothering me the most since my first round of Taxol. My main complaint is diarrhea. Yukky I know, hope you’re not eating whilst reading this! After the first round I thought it was a stomach bug and treated it as such – tried to starve it out by avoiding everything except dry carbs. But when I started eating normally again it was still there so had a chat with Dr N and apparently it can be classic Taxol. So, after having the symptoms again after my second round she reduced my dose for the third round. Fingers crossed those symptoms clear up and I feel safe to leave the house without worrying about toilet issues and if in fact there is a toilet where I’m going!
So my bloods are good again. Still in the range of proceeding with the chemo although some are noted as being on the low side. The one that’s a bit low at the moment are the Haemoglobins. These carry oxygen around our bodies and if mine are 100 or lower (115-165 is normal range) then it’ll be a blood transfusion for me. I’m siting at 109 at the moment, down from 114 the week before and 117 the week before that. When I started they were at 127. If my Haemoglobes get to less than 100, no doubt I’ll feel it as it can make you feel really lethargic and tired. The blood transfusion would give me a real boost and lots more energy apparently. A couple of older ladies are getting blood transfusions today after their chemo. Fingers crossed it doesn’t come to that for me. The thought of it makes me feel a bit icky. It does look like I’m heading that way though.
Sunday, 27 January 2013: Apart from having chemo on Thursday, I actually had a nice day. I dropped Rosie to daycare in the morning, went to a cafe in Toowong for a cuppa and read until it was time to go to the hospital for my treatment, visit to hospital was uneventful: I just read, listened to music and did some of my blog, then I went to Toowong for some retail therapy before collecting Rosie again, home then acupuncture. A pretty busy day. On the afternoon/evening of treatment days on the AC I would be okay for the first hour or two then quickly go downhill needing my bed and a rest. I would feel very foggy and vague with a migraine coming on. On the Taxol I feel almost normal. The difference is amazing and I’m very thankful that the hard chemo is over and done with.
In my last post I was complaining about my own failings and how there’s so much I’d like to do to help myself in healing and feeling well but how I often feel overwhelmed by it all. I’ve taken the first step and have just started adding a small task each day and focusing on that. I’m taking the vitamins that will help regenerate the good cells that are currently being destroyed by the chemo. I’ve also started my lymphodemia exercises again. After starting pilates under the guidance of a physio last week I’ve started developing cording under my arm again so I need to get on top of this before I continue with the pilates I think. I don’t want to make it worse by doing too much too soon. Another thing I need to start focusing on is meditation. I’m starting a mindfullness and meditation course being run by the Cancer Council Queensland in February (did I mention that previously?). They ask that attendees commit to 40 minutes a day, 6 days a week. It’s good to do it at the same time each day so the only time I can see myself having the time, peace and quiet to do this consistently is in the evenings after the girls have gone to bed. I’ve started with 10 minutes just before bed so will have to work at extending this. I’m looking forward to starting this mindfulness course and meeting other people in a similar situation to me. A good habit can be so hard to create, a bad one so tough to break.
Back in September before we’d even left Yeppoon, Cancer Council Australia got in touch with me to see if I’d be interested in putting my story up on their website and being a media volunteer/Pink Ribbon spokesperson. They’d asked on their Facebook page if anyone blogged about their cancer journey, I responded that I did and they got in touch from there. I’ve recently submitted my story to them and will be chatting to two of their staff this week. I’m really happy I can share my story and hopefully help others who are newly diagnosed and in the midst of possibly the most anxious and scary moments of their lives. In regards to being a media volunteer, the thought of doing any public speaking about anything at all makes me shake in my boots but it’s a fear I should probably face and what a great cause to do it for. I’ll be really proud of myself if I’m able to overcome my fear of public speaking.
We’ve booked ourselves a family mini break to Noosa in February which I’m really looking forward to. It’s the weekend before my birthday so we may even get a babysitter while we’re there and go out for dinner. We’re staying at the Break Free French Quarter on Hastings Street. When we bought a new freezer last year we were given holiday vouchers to use so we’ve cashed some of them in for our mini break which has halved the price. Derek and I may also go and stay in the city for a night to use some more of the vouchers and have some quality time together. They run out on 31 March 2013 so we don’t have a lot of time to use them. It would be great to see a show while we’re in there and again go out for dinner. We were regulars at eating out pre-kids and it’s something I miss a lot since having the girls. My birthday is on a Tuesday this year (19 Feb) and I’m just glad it’s not on a Thursday which is my treatment day. Renae B and I are going to Norah Jones on my birthday and hopefully out for dinner beforehand. Me and dinner, I’m a bit obsessed about going out for dinner aren’t I?! Obviously I don’t get out much.
Thursday 31 January 2013: The weather we’ve had in Queensland (and over the border in NSW) over the last week has been wild. The wind at our house in Brisbane lasted for over 14 hours. I think wild wind could be used as a form of torture, it could make you go a bit batty after a while. Following the wind came the peace and quiet you can only get from having no power (for 3 days). No fridge or freezer humming, no TV, no microwave, no computers or fans or aircon. We did have a radio with batteries to keep us updated as to what was going on around Brisbane and elsewhere in the state but when that was turned off, the peace and quiet was actually welcomed (when the girls were quiet also). Having no power certainly makes everything just that bit harder. Boiling water for tea, coffee and Polly’s bottles plus for washing up as we wanted to keep the hot water in the hot water system for bathing. Lucky for a full gas bottle on the BBQ and Derek’s initiative in the kitchen, we ate very well while the power was out. We had a good clean out of the fridge and freezer and fortunately didn’t lose much. It was a relief when the power came back on and I really feel for people in flooded areas who will be without power for weeks or without anywhere to live for that matter. Good luck to everyone in Rockhampton with the peak of the river still to come.
So I’m back again having my weekly chemo but this week it’s the long one again with Herceptin and the trial drug/placebo added in. I’ve been here since 10am and will be finished by 5pm so another long day. I’m here by myself again, just chilling, reading, doing online grocery shopping, having a snooze, eating. It’s nice quiet time and also I do a bit of people watching which is always enjoyable for some reason. I wouldn’t call myself a sticky beak but it’s interesting watching the nurses attending to other patients and seeing who the other patients are. They’re mainly old and I do feel a bit out of place in that regard. There are a lot of young nurses which balances it all out 🙂 I haven’t met a grumpy oncology nurse yet, they probably don’t allow them through to work with cancer patients. The nurse I have today is particularly bubbly. My Haemoglobins are not surprisingly lower again – 104 this week. Getting mighty close to that 100 mark where a blood transfusion may be required. The nurses said that it will also depend on my symptoms and how bad they are, not just the blood count. That’s a relief. One of the nurses also said that the haemoglobins have a 128 day cycle so they may start going up again soon, fingers crossed. On the upside, my platelets (for clotting) and neutrophils (for fighting infection) are both looking good at the moment. A nurse mentioned last week that people with cancer can’t actually give blood or donate organs. I’ve never given blood because I’ve always been underweight and had been told by a friend that I wouldn’t be eligible because of that. I’ve just looked on the Red Cross website and it says people 45kg or under can’t give blood. I am over that, even now (I have lost a couple of kgs since starting treatment). I’ve also read that cancer patients can’t give blood until the five year clear mark. Nor will they accept blood from someone who’s had a transfusion within the last 12 months, unless it’s that persons own blood. And while I’m on that subject, I’m a bit surprised that it wasn’t suggested to me before starting treatment to have some blood taken and stored in case I needed to have a transfusion. Not sure if this is even possible but if it’s not, it should be available as an option for people about to start cancer treatment (in my opinion). And if it is available, then someone within my medical team should have mentioned it to me at some stage. Too late now but something someone else might find helpful. I am an organ donor and proud of the fact so this is something I need to look into a bit further.
Acupuncture later today which is always relaxing. My acupuncturist is also a naturopath and has recommended some dried herbs to help with different symptoms. For instance, passionflower is a sedative (much like camomile) and after I have a cup of tea in the evenings, I feel myself relaxing and getting ready for bed. If I ignore that feeling and stay up that’s not helping but if I go to bed early soon after having a cup I find I can get to sleep easier than normal. She’s also given me some moxa to take home and do on myself. It’s a black herbal stick that you burn and put over the pressure points on your body. There are lots of other natural medications and remedies she’d love to try but the clinical trial team are particularly strict on things, especially remedies classed as herbal and they have no knowledge about. It’s disappointing as it would be great to try some different things to help with my symptoms and boost my immunity but I can understand why they don’t want anything messing with the research data. Anyway, M, my acupuncturist is also a great listener and I always feel better physically and emotionally after seeing her (every Thursday afternoon).
Mum is here at the moment and Sue went home a couple of weeks ago. I’m sure I’ve said this before but I’ll say it again, it’s so great the level of support we’re getting from our families. They’re putting their lives on hold in a way to help us get through this rough patch. We’re wearing them out but they solider on and just get on with it. I know they love being able to help, especially with the girls. Having them here to help makes my life much less stressful which is really what I need at the moment. As little stress as possible.
Polly is as gorgeous as ever. She’s becoming quite demanding though and doesn’t like to be left alone. She’s also getting a bit of Mummy separation anxiety. Still no teeth, although she did pull herself up on the lounge yesterday all on her own. So clever! She’s a joy and her and Rosie get on really well most of the time. Polly can be quite rough and Rosie just lets her. When Polly grabs a handful of your hair, she doesn’t let go until there’s a clump in her hand (not that I have that problem but watch out for men with chest hair!) Polly has started yelling a lot lately. I know she’s trying to communicate and be heard but all I can picture is Rosie and Polly trying to outdo each other and giving me a massive headache in the process. I can also picture them laying in bed reading together so it won’t be all noise.
Rosie’s behaviour have improved immensely although bedtime is still an issue. The reward chart does work though so I’m hoping with time her behaviour will continue to improve. Rosie is a busy little bee who always likes to be doing something. Derek would love her to be a tennis star so I’ve bought her one of those ball on a stick games to play in the back yard, get her coordination going first. Uncle Brian and Aunty Deb gave us their old piano so that’s sitting there now waiting for me to teach myself a little before passing on my new learned skill to Rosie. I’m going to teach myself the basics via You Tube. I’ve always wanted to learn piano so it’s the perfect opportunity. Rosie is very keen to learn a musical instrument. She tells me when she turns 4 she’d like drums, guitar, piano. Piano – tick. Drums – not a chance. Guitar – banjo or ukulele maybe? She’s also showing an interest in ballet. She even puts her leg up on the wall to do warm ups. I’m thinking of getting her into some kind of dance class. She tells me she’s missing Group 8 at Montessori and when I asked her what she missed about Group 8 (she’s now in Group 4), she said the dancing. I think she’s going to be a very active girl.
Sunday 3 February 2013: Derek and I went out for dinner and a movie on Friday night just gone, thanks to my Mum for babysitting. Derek started soccer training last week, he’s keen to be fit and healthy in 2013. He’s even going to do Tough Mudder on the Sunny Coast in August I think it is. I’ve noticed a few of you are doing it, you’re all crazy! Good luck 🙂
I’ve felt pretty tired all weekend with lots of headaches so have just laid low, not getting up to much at all, which is just what I needed as I have a big week coming up with quite a few appointments and meetings to go to. I’m going to an allergy clinic on Tuesday to do a skin prick test for my egg allergy. I want to find out more about the protein I’m allergic to in the egg white and am really hoping it’s something that will go away with time. I’ve heard that can happen and am dreaming of eating eggs again soon. I’m going to the Younger Women’s Group meeting on Tuesday night at Choices at the Wesley. I’m really looking forward to connecting with some other younger women with cancer. I’m going to my pilates physio weekly, she adjusts my exercises as needed to allow for any problems with cording or whatever is happening at the time. Last week I had a few back issues as well. She did some therapy then we got into some very light but targeted exercises.
After having the trio of drugs on Thursday I felt pretty bad on Thursday afternoon and Friday. This hasn’t happened since being on the AC chemo. I even had a terrible headache on Thursday night and my skin was a shade of yellow, which is what would happen on the AC. It was quite a long day – 9:40am to 5:00pm. The trio days are always going to be long so I’ll just need to be prepared each time with lots of food and my phone charger 🙂
My hair has started growing back. It’s really soft and downy, almost like babies hair. I was going to shave it with a razor again but have decided to leave it as it all seems to be growth and no loss at the moment. One of the nurses said that our hair has a 21 day cycle and also the chemo is a lower dose so maybe that has something to do with it. Anyway, it will be some time before it’s back to what I would consider a normal hairstyle but it’s something to look forward to.
Up until now I think I’ve been extremely good at taking this all just one step at a time. Lately I’ve started looking ahead a little further and what I see in the future is starting to freak me out. I’ve made my first appointment in regards to my radiation treatment. This is a pre-treatment appointment to go through everything with the Radiation Oncologist on 14 February. Treatment itself should start in April at some stage. I’ve said previously it will be 5 days a week for 6 weeks. I was quite concerned about not being able to have close contact with the girls during this time due to the high doses of radiation being targeted at my body but after hearing from my friend who’s just started radiation, she’s been told she can kiss and cuddle her daughter and I am so relieved. Not being able to kiss and cuddle the girls for 6 weeks would have been near impossible and I would have been a mess. It would have been torture. I’ve also started thinking about the hormone therapy which will start after chemo finishes. It’s been mentioned briefly by Dr N, my oncologist, on a couple of occasions (when I’ve spoken about my stubborn ovaries) and she just says that’s a conversation for another day. I’m going to bring it up with her again soon to clear my mind a bit. It keeps hanging around in there and the main reason is because I can’t let go of the thought of having another baby, not just yet. It is something I need to discuss with my doctors in more detail before I can start to deal with it in any other way. What I mean is I can’t yet come to terms with the idea of not having any more kids until I’ve done some more research into potentially having another baby after my hormone therapy has finished, if my body is able to at that point. What a miracle it would be to have a baby at the end of this nightmare. Don’t worry, I’m not deluded and am very aware that the chances of it happening are potentially slim. But the choice needs to be mine and Derek’s, not because the Dr just says so. I need to know the whys and why nots before this part of the story is over.
Menopause has also been on my mind of late. More discussions to be had with my doctors but I know the symptoms of menopause and I’m not looking forward to them at all. In fact, dreading them. More than I was dreading the symptoms of chemo. Think about it, chemo goes for 6 months, menopause will likely go for 5 years while I’m on the hormone therapy then I could be lucky enough for my ovarian function to return to somewhat of a normal state once I finish the hormone therapy (yay, periods! which could possibly mean baby but not necessarily so), then BAM, 10 years later I could go through it all again! Derek said, at least you’ll know what to expect second time round. Not something a husband should say to someone about to go through menopause at the tender soon to be age of 35. What about the permanent aging it will do to my bones and body? I. Need. To. Pull. My. Head. In. Really, I do. These are discussions I haven’t even had with my doctors yet and maybe menopause won’t even be that bad for me… So, need to continue on with the attitude I’ve established over the last few months. One. Step. At. A. Time. Don’t think too far into the future and just take it a day at a time. I will drive myself a bit batty otherwise 🙂 So, note to self, talk to doctors first, then drive myself batty once I have all the information.
Just to finish on something a bit more positive, I’m doing a reward chart for myself (along with one for Rosie) on my iPad. I get stars for doing things I need to to keep myself feeling good and as healthy as possible at this time. Then once the stars add up I get rewards, yay! Such as buying tea (I have a tea obsession as well as a going out for dinner obsession), Kindle books, going to the movies alone, retail therapy and beauty therapy. I’m also saving up stars to go on a weekend meditation retreat. There’s even a silent one up the Sunshine Coast – that would be glorious! No talking! For a whole weekend! Sounds pretty good to me, something to work towards…
Here are some recent photos of the girls, who love talking and making noise 🙂
Our cheeky girl, Rosie Posie. Can’t believe she’s 4 this year!
It’s all about the food with Pretty Polly.