I can’t believe it’s been two months since my last post. Especially since it’s something I know I get a lot out of and I feel such a weight lifted once I finish one and send it off out into the abyss that is the internet, to pop up onto screens of smart phones, iPads and computers that belong to my family, friends and sometimes even strangers. There are lots of things I know I should be doing for my own sake but since before Christmas I’m having a hard time just getting off my backside and doing them. I really need to give myself a major kick up the bum and just do them. Maybe airing them to everyone will help. I’m not doing much exercise, I’ve stopped eating as well as I could be, I’m not taking the extra vitamins to help me fight off illness as often as I should be, I’m not meditating as often as I’d like to, I’m not doing my lymphodemia exercises as often as I should be, I’m not making connections with people in a similar situation to me, I’m not being very nice to my husband – all things I want to be doing but just not doing for some reason. What’s holding me back? I’m exhausted, that’s a pretty good excuse, isn’t it?! I know if I just did half of these things I probably wouldn’t feel so tired. I’m sick with a cold I just can’t shake. I know if I was just doing half these things over the Christmas break I could have kicked this cold in the backside. Oh well, no use dwelling on things I can’t change. Now I just need to start, maybe I should focus on one thing at a time instead of looking at all the things I need to do and feeling so overwhelmed and tired again. Maybe I’ll just lie down and have a rest instead… It’s tiring trying to do all the right things all the time and much easier to not do them at all. In the end I do what needs to be done. I spend time with the girls, I fulfill their basic needs of love and attention, eating, sleeping, toileting, I fulfill my own basic needs and then there’s often not a lot of time left for anything else, even with help from Derek, Mum and Sue. Can anyone help me with this battle that wages within me on a daily basis? I’d love someone to do for me what we as parents do for the girls. Eat this, now wear this, now do this for your own good, now do that for your own good, go to sleep now so you have lots of energy tomorrow, take this medicine so you feel better, blah blah blah blah blah. If only. I look at Polly and think how great it would be, at this point in my life, to be like a baby having someone do everything for me that needs to be done. My life would be so much easier! Of course I still want to be able to walk and talk but someone to look after my routine for me and fulfill my needs so I don’t have to even think about it. If only I was a celebrity or rich, I could pay someone to fill this role in my life. Okay, I’ve taken it a step too far now I think. Retract… Hopefully writing this and getting it off my chest will help me do what is only going to help me. I’m going to start with taking those vitamins tonight and meditating in the morning. Surely I can do those two things.
Anyway, I’ve written this post in dribs and drabs, starting back at my last treatment just before Christmas.
Written on 20 December 2012: Today is my 4th round of chemo. I’m sitting here at the moment waiting for my pre-meds (anti-nausea) to take their toll before they start with the chemo. I’m listening to Angus & Julia Stone, nibbling on almonds, pepita and sunflower seeds and sultanas while trying to drink 3 litres of water (throughout the day) to help keep my kidneys well. I’m in pain because my ovaries are still working and doing their monthly thing. The chemo often makes women menopausal but that’s not an issue for me yet, which is good and bad. I’d love them to keep working for another 15 years but I know it’s inevitible that they’ll be laid to rest sooner rather than later, maybe even whipped out. Dr N said again today that ideally they’d like me to be menopausal but that’s a discussion for another day once chemo has finished and the next lot of targeted treatment starts. Anyway, they’re being a bit stubborn or maybe they’re in denial…
So the chemo has started. First the red stuff (the technical term for Adriamycin) was pushed through a syringe by the oncology nurse and now the kidney killer/migraine madness (technical terms for Cytoxan) is being dripped through into my portacath. I’ve enjoyed a lovely mixture of sandwiches and cheese and crackers. I really should make myself a gourmet wrap or sandwich to eat rather than the hospital food. At least it would be something to look forward to. I’ll aim to do that next time. To be honest though, food isn’t really the first thing on my mind on the morning of chemo when the butterflies make themselves known once again. They take over the recesses of my stomach and don’t allow hunger to pop up on the radar until I’ve left the house and I decide I am actually hungry and the snacks in my bag aren’t going to suffice.
The last couple of days were extremely draining and this morning I felt the worst I’ve felt emotionally in some time. It’s all catching up with me I’m afraid. But this to shall pass. I’m just having one of those weeks where it’s all compounding on top of me. I know it will lift up and dissipate into the atmosphere soon enough. I’ve just got to ride this wave until I reach the beach and can enjoy the sunshine again. Mum went home last week, the house is definitely a lot dirtier and untidy without her there 😉 It’s nice to have some family time but also hard to tend to all the girls needs on my own during the day when feeling so exhausted. It means that my own needs (eating when hungry, resting, quiet time etc) are pushed aside to make sure the girls are having their needs (and Rosie’s wants – I want this, I want that) fulfilled. Derek was away Tuesday night so it was the three of us Tuesday, Tuesday night and Wednesday. On the upside our new car (Toyota Camry in Reef Blue) was delivered on Tuesday afternoon. The girls and I had just been for a swim to cool down. Polly wouldn’t sleep and Rosie and I were hot and bothered after having power tussels all day long. I always win so I really wish she’d save us both the tears, tantrums and trouble and just do as I ask straight up. Anyway, after the swim the girls were going to have an early bath. The car turned up right at that time so I was signing all the paperwork for the car with wet towels, togs and a dirty swimming nappy on the floor plus two nude little girls needing attention. Rosie put herself in the bath and I juggled Polly while we did the handover for the car. I wonder in amazement how I get through some days. Wednesday was a much better day.
I’m not the only unwell Hower in the family – our cat, Maui, has been visiting the vet lately and has just been diagnosed with an overactive thyroid. She was looking quite scrawny (but still with a big appetite) so off to the vet we went and after two blood tests, which were 4 times more expensive than the ones I have to get, we’ve got a diagnosis and will have to start giving her a tablet daily. Bags not doing that job!
Chemo has finished and I’m just getting a flush with saline so I’ll be good to go soon. I’m not looking forward to the inevitable headache later today. It’s a killer normally. I’m not prone to headaches normally but the headache I get on the afternoon of day 1 borders on a migraine. I take a couple of panadol, lie down and try to rest it out. I wake up on the Friday feeling much better thankfully.
Written Tuesday, 9 January 2013: It’s the day before my next treatment. We had a very busy festive season for someone who should probably be resting but I couldn’t resist the steady flow of visitors and fun to be had. There’s still a party girl in there somewhere. Before Christmas we had Derek’s work Christmas party at Rydges in Southbank and then we went to Seaworld as a social event for his work (but didn’t actually see anyone from his work which isn’t very social at all). We had a lovely day and upgraded to VIP passes so we can now go to Seaworld, Wet n Wild and Movie World as often as we’d like until 30 June 2013. We went to Wet n Wild after Christmas which was a massive fail due to huge lines, massive crowds, not enough shade near pool areas and a big thunder storm which shut the rides down for a good part of the afternoon and scared the living daylights out of Rosie. Derek also took Rosie to Movie World last week and they had a good morning. We’ve had friends visit, family stay over Christmas and Rosie to entertain. I’ve taken myself off to the movies a couple of times alone, which I absolutely love to do. A meal and a book afterwards is an extra special treat. I also took Rosie to her first movie last week (Madagascar 3) and even though she insisted on wearing her ear muffs for half of it, she really enjoyed it and asked to go again the next day. I managed to get to the shops a few times before Christmas and chemo on 20 Dec to do our Christmas shopping. I’m always happy to get out of the house when I’m feeling good so I make the most of these good days by doing things like Christmas shopping and even grocery shopping sometimes rather than rely on internet grocery shopping. These small outings are very draining for me though, even on my good days. Seaworld had me exhausted for days to follow.
I think my last post was just before the 2nd round of chemo. Wow, I don’t even know where to start in regards to my treatment. Okay, I’ll start with something my oncologist said to me during my last chemo on 20 Dec. The hard part is over. Thank goodness for that! Dr N says the AC is normally much harder to handle than the next lot of chemo which I start tomorrow. I had 4 rounds of the AC all up and my blood counts have been good up to this point so no delays in treatment at all. Each round had it’s ups and downs. The first was by far the worst, most likely due to my extremely fragile state both physically and emotionally. The second was hard to handle due to one of my anti nausea meds called Dexamethasone. I was so jittery and shaky that for the third and forth rounds Dr N and I played around with the dose a bit to reduce this but still help with the nausea. I think we got it just right in the end but thankfully I won’t need it going forward. I also had my first visit from mouth ulcers and oral thrush – lovely, just when I’m starting to feel better and want to eat food again. Not that I don’t eat food after treatment. The Dexamethasone increases appetite so I’m constantly hungry but often don’t feel like eating anything in particular. A bit like being pregnant. Eating helps me feel better so that’s what I do, eat. Pretty normal for me really but very annoying looking from the cupboard to the fridge and freezer, back to the cupboard throwing my hands in the air, clutching my stomach in hunger, wondering what to eat to feed the urges. The third round was when we had those really hot days in Brisbane and my nausea picked up on days 4 and 5 which threw me a bit. I think we reduced the Dex too much initially. Oral thrush again. Power tussles with Rosie on a hot day ended with us having a cold bath together to talk through our issues. Round four was 20 Dec and I’ve talked about the lead up above. Looking back it was probably a good thing Christmas was after this as I don’t seem to remember the effects as much as I do the previous rounds. I do remember feeling off and very tired but the good memories are pushing out the bad ones. After each round and the “bad” period of about a week, then the oral thrush and mouth ulcers for a few days following the “bad” period I would start to feel like myself again. The only side effect that is always there is fatigue in varying levels. Oh and hair loss of course. My brother Ash shaved it with a razor for me after Christmas and it felt sooooo good! I need it done again as I’m starting to stick to my pillow which is more annoying than you can imagine. Lucky for my light weigt sleep turban, although a totally bald head is much better. I’ll get Derek to shave it on the weekend for me. Swimming in the pool with a bald head feels amazing. As much as I love my bald head, I hate the fact that my eyebrows and lashing are falling out. I’ve come to terms with it and it’s not upsetting me as much as I thought it would but I look weird and not like myself. It’s funny, I don’t feel the hair on my head defined me in any way but I do feel that my eyebrows and lashes define my face in a certain way. It’s hard to explain but looking at myself with no hair, I still looked like me but looking at myself with less brows and lashes than I normally have and I just don’t look like me anymore. Add the very tired eyes plus lines and redness on my forehead and I feel like I’ve aged about 10 years in 3 months. I just hope my brows and lashes don’t disappear completely. That will be much harder to deal with. Or maybe I’ll surprise myself again…
Anyway, for the two “good” weeks following the one “bad” week I’d ease myself back into the outside world slowly at first and then sometimes doing a bit more than I probably should have. I’d exert myself a bit too much one day and pay for it the next. Like I said, ups and downs. I felt I could put up with the bad week to have those two goods weeks though. I’m a bit worried about the next lot of treatment as it’s weekly for 12 weeks. Although the chemo, Taxol, is given at a lower dose than the AC, I still hope for good days mixed in with the bad, rather than bad days and then feeling average for 12 weeks. I think I’d rather the ups and downs rather than feeling average for so long. Dr N tells me that a lot of women breeze through the Taxol after doing the AC and apart from fatigue, don’t get a lot of side effects, particularly nausea. Here’s hoping. Along with the Taxol, I’ll also be starting on the Herceptin and either the trial drug, Pertuzamab or the placebo tomorrow. So the chemo drug, Taxol, is given every week for 12 weeks and the Herceptin and trial drug will be given every 3 weeks for 12 months. The side effects of the Herceptin and trial drug should be a lot easier to manage than any chemo drugs given so even though a year is a long time, they shouldn’t knock me around like the AC has. My hair should also start growing back once the Taxol has finished at the end of March. But then I’ll have something else to keep me occupied, radiation, which I’m not thinking about much at this point. I’ll meet the Radiation Oncologist in February and I’m sure I’ll find out more about it then. At this stage I think it’s going to be 5 days a week for 6 weeks.
Tomorrow is a long day. I’ll have to be at hospital for about 5 hours as they access my port, take blood, send it off to Sullivan Nicholaides for testing, wait for a good outcome on my blood counts then from there I’m not sure of the exact schedule. Will they give me anti nausea meds via my port? I think it goes Taxol, Herceptin, trial drug. I suppose I’ll find out soon enough. I’ve just finished the third Hunger Games so will have to start a new book on my Kindle to keep me occupied for that long. I’m feeling sad to have finished The Hunger Games trilogy, I grew attached to the characters. Looking forward to the movies now.
Wednesday, 9 January 2013: So here I am again, back at the Wesley with a needle sticking out of my chest. It’s all good though, I’d rather a portacath than having to find a vein in my one good arm each time. Accessing my port is nice and quick, even if it does hurt sometimes the pain is brief and over with before I know it. I hear of people with disappearing veins in the arm and having to try a number of times before the nurse finally gets one. Very traumatic. We’ve come well prepared for our long day with reading materials, laptop, food and of course a positive attitude. I have been feeling quite run down and very fatigued lately but I took a sleeping tablet last night and have woken feeling much better today. Still tired but not as desperately tired as I have been. The drugs have finally started after a long delay this morning, a hold up with pharmacy for some reason. Anyway it looks like we could be here for longer than 5 hours. At least I have a nice spot with a window behind me so I can see daylight.
Blood counts are good enough to go ahead but my neutrophils are low – 1.26 when normal range is between 1.5-8.0. These help fight infection so I’ll have to be careful with germs and illness and make sure I keep taking my temperature. If 38 or over, straight to hospital. Antiseptic handgel makes me gag though as it smells like the antiseptic stuff they use when accessing my port and each time they attach some new drug. It’s so strong and I know that whenever I smell such strong antiseptic in the future I’ll be reminded on having chemo.
So that brings me up to date really. I look back over the last couple of months and am really surprised I’m still in such good shape both physically and emotionally. A good sense of humour and positive attitude has certainly gone a long way I feel. Don’t get me wrong, there are times when I feel sorry for myself and just want to sleep for a long time but I do have so much to be thankful for, all the people who love and care for me and I love and care for. Taking one day at a time sounds like a cliche but it really works and I’m not even having to work at it. This is something that’s coming nautrally without me even trying. I focus on the present and immediate future, what’s for dinner, what’s happening tomorrow but that’s often as far ahead as I look. I don’t stress about things as much as I used to. What is, is. If it’s something I can’t change then I try not to worry about it. I just have to let this next year run it’s course and really squeeze everything I can from the good times. I don’t watch as much TV as I used to. I’m enjoying reading books again. I have acupuncture weekly. I’m starting a weekly mindfulness and meditation course with the Cancer Council on 8 February (every Friday for 8 weeks so if Mum or Sue aren’t here I’ll be in need of a babysitter for Polly if anyone can help out there). I’d like to get to the movies at least once a month (Derek and I will go out for dinner and see The Hobbit to celebrate our 5 year anniversary on 29 Dec once I’ve caught up on some sleep. We both totally forgot about it, Sue, Derek’s mum reminded us – oops!). I’m going to join a young woman’s cancer support group. I’d love to get in touch with other Brisbane mum’s with young children who are also going through their own cancer journey or have recently. I feel this kind of support is what I’m needing most at this time so need to get in touch with some of my contacts about this.
Rosie has been very testing and trying for months now but I’ve seen a real improvement recently. She’s responding very well to her reward sticker chart. She’s also responding well to having little dates alone with Derek and I, separately. She started back at daycare on Monday in a new group with new teachers. This threw her a little so she was upset when I left her (which upset me terribly) but she ended up having a great day and I think she’ll be fine on Thursday. Rosie literally doesn’t stop talking or singing unless she’s swimming underwater or sleeping. The pool is a big hit and I’m so glad we have it. I don’t swim everyday but Derek and Rosie do. As soon as Derek gets home from work they jump in the pool before bathtime. Her new swimming teacher has done a fabulous job in increasing her confidence and skills. That’s Derek of course. She certainly looks the part in goggles and cap. It’s great hearing her laughs and squeals coming from the pool.
Polly is a funny little girl. She’s started crawling but not in anyway I’ve seen before. Rosie was a commando crawler but this is different as she pulls herself along in one movement. One arm is bent so she uses her forearm to pull forward while the other hand is flat on the ground pushing upwards and forewards, used as a guide to get her where she wants to go. Her feet help propel her forward. She makes a funny noise whilst doing it. She’s certainly found her voice of late as she loves screaming to demand attention. And I love the fact that her first sounds are Mumma. She’s still very cheeky and smiley and such as easy baby to look after. I said recently that because 2012 is when Polly was born it will always be a good year for me, in spite of getting cancer. And when I think about it really one wouldn’t have happened without the other. On that note I’d go as far to say that I would welcome the cancer with open arms just to have Polly in my life. Because if not having cancer meant not having Polly, well I can’t even put into words how terrible that would be. Just unimaginable. So here we are, our little family of four, going through a rough patch and I wouldn’t have it any other way.
Here’s some recent pics:
Me having chemo last round
The girls on Christmas morning
Polly and her Mummy’s Wish teddy bear