I'm now a year older!
Guess what? I'm now the ripe old age of 39 and for once I am happy to be a year older and am planning a doozy of a celebration for next year because this year's birthday was a fizzer...
After battling side effects from the new drugs - in particular oseophagitis,thrush, severe throat ulcers and minor nose bleeds in addition to staph infection resulting in boils on my face and back I lined up for my 5th chemo of the trial - my white cells ok we went ahead despite me feeling not so great which we put down to the remnants of a sinus infection (we thought that was causing the throat pain).
My neighbour and great friend organised a wonderul girls lunch for me and I was surprised by the presence of three of my best friends from Brisbane! Had a wonderful day despite my throat. They cooked up a vegan feast and it was awesome food and friends!
All good until my sinus got better but not my throat and I was unable to eat anything other than very small amounts of partially frozen smoothies. Oncologist decided that it looks like on on the trial drug not the placebo (ulcers affect more than 50% of patients) so I stop taking it to try and clear them up. Then the day before my birthday I'm still unable to swallow without severe pain and I get progressively more tired and achy but put it all down to being unable to eat - not really a surprise though when I spiked a temperature and ended up in Emergency that night - not really any more surprises to find out I had virtually no neutrophils and was anaemic.
Lots of tears that I would be waking up in hospital on my birthday, that the kids would wake up and not be able to come and give the traditional morning birthday hugs and gifts, that I was feeling pretty crap, that I was so angry at this bloody disease!
The kids came up after school to celebrate my birthday with cake and then went home to have a nice birthday dinner. That night was pretty hard - just lonely, sad and fearful - I hate how so often when I am in "patient" mode I feel very disempowered.
I spent 4 nights in hospital hooked up to IV antibiotics, having a blood transfusion and waiting for my neutrophils to rise above virtually nothing - eventually having neupogen injections to coax my bone marrow back into action (boy I got severe pain from the second one! but at least my counts rose!). I got to join my brother and his family for the last night of their visit (we again had plans to have a family gathering for my birthday and parent's 40th anniversary that had to be cancelled) so that was really wonderful.
As soon as my neutrophils rose, my ulcers healed and I felt back to "normal" me. Yippee! So my dosage on the trial drug has been halved and the chemo dropped by 20%.
The next hurdle was my first progress scan last Monday - I am pleased to let you know the scan showed regression of the disease! I had a 30% reduction of the size of the tumors they are measuring in my lungs, a 14% reduction in the size of the axilla node and no new mets. I have also seen the skin met shrink and change colour. All great news though of course I am cautious as there is some way to go if I hope to get into remission but this is a step toward that at last.
I am continuing on my path of lifestyle change. I started the 12 week Gawler program yesterday and am looking forward to learning and sharing and supporting with the other participants. I had my weekly chemo today - my white cells were low again and just scraped in for chemo but I feel really good so hopefully we won't have to worry about neutropenia again. My son is unwell with very high temperatures and a cough and needs his Mummy - you can't explain the germ thing to a 4 year old so I figure I'm already exposed now so I'm not withholding cuddles.
I haven't been on the network much lately so I apologise for not keeping up with everyone. I hope to be back into some sort of new routine soon. Life for now is full of appointments and activities focused on wellness. It makes me sound busy but much of that time is spent meditating and just living now and in the moment - enjoying life and my family.
So here's to turning 40 next year and having a year of wellness and good times with my family.
I think of my BCNA "sisters" regularly and hope everyone is doing well and living life to the full.
Amanda xxx
Comments
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Hi Amanda
I had coffee with Tina today and she filled me in on your good news - re regression of the disease. That is such great news!!!!! Keep up all your hard work and positive mind set - it is obviously paying off.
You have really been put through the ringer - my heart goes out to you. And once again I commend you on your courage and strength. With everything you are going through you are still an inspiration to others.
Keep cuddling your kids it's good for the soul. My daughter had terrible gastro 2 days before my last chemo. What can you do? You can't turn off being a Mum - nor do you want to. Luckily I didn't catch the bug and was able to complete my last treatment - yay!!!
Happy belated birthday. Keep enjoying family and life!
Love always
Ann-Marie xxx
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Hi Amanda
I had coffee with Tina today and she filled me in on your good news - re regression of the disease. That is such great news!!!!! Keep up all your hard work and positive mind set - it is obviously paying off.
You have really been put through the ringer - my heart goes out to you. And once again I commend you on your courage and strength. With everything you are going through you are still an inspiration to others.
Keep cuddling your kids it's good for the soul. My daughter had terrible gastro 2 days before my last chemo. What can you do? You can't turn off being a Mum - nor do you want to. Luckily I didn't catch the bug and was able to complete my last treatment - yay!!!
Happy belated birthday. Keep enjoying family and life!
Love always
Ann-Marie xxx
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hi amanda, great you had a 40th birthday!
next time i get to sydney i hope to do the bridge climb also. it's on my list, along with uluru and maybe coober pedy, ( for starters. )
i am interested in your approach for complimentary therapies along with your oncologist's knowledge.
also chinese therapy, meditation( or finding calmness in reflection) and the gawler foundation approach.
i have looked into this sort of thing also and am " open" to ideas.
my younger son was 10 at my diagnosis. he asked me?" did i cause the cancer in your breast?" for some reason he thought he might have hit my breast one day and that caused it. odd i know.. but i told him.. no you did not.
i wonder what young children and older too think, when their parent is dealing with it.
it is a tough journey for all the family and loved ones. for me i tried to be honest and open about it, and explain to my children, but also to try and let their lives carry on as normal as possible. i wish you all the best.
kathy.
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wow Amanda thats wonderful , i have been so worried for you keep it up .
HAPPY LATE BIRTHDAY TO YOU! HAPPY LATE BIRTHDAY TO YOU!
HAPPY LATE BIRTHDAY AMANDA MOOOOOOOOOOOOOOOOOOOOOO
HAPPY LATE BIRTHDAY TO YOU AND HUNDREDS MORE. XXXXXX
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wow Amanda thats wonderful , i have been so worried for you keep it up .
HAPPY LATE BIRTHDAY TO YOU! HAPPY LATE BIRTHDAY TO YOU!
HAPPY LATE BIRTHDAY AMANDA MOOOOOOOOOOOOOOOOOOOOOO
HAPPY LATE BIRTHDAY TO YOU AND HUNDREDS MORE. XXXXXX
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Hi amanda
Happy belated birthday - sorry you have had such a nightmare leading up to it !! You have an amazing spirit in all this for sure!
Fantastic news about your tumors shrinking - that is wonderful !! It at least makes you feel that all you are enduring is doing something!! May it keep going yeha!!!!!!!!!!!
Keep up those cuddles - I am with you there. both my girls are great cuddlers and my youngest also got sick in my low cel phase - you cant exactly switch off being a mum can you!!
Well so good to hear from you on here!! Keep smelling the roses wherever and whenever you can.
All the best to you and your family.
Debsx
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So glad the drugs are working, but my heart goes out to you with what you have gone through. cancer is shit shit shit !.
Have not been on for a while , just starting to catch up.
Happy belated birthday, sending big hugs and my guardian angels to watch over you. xxxxxxxxxxxxxxxx Deb
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So good to hear from you, and reading the words regression and reduction in your blog. A slow and steady journey for you. I am so plesaed you are continuing to focus on the lifestyle changes, foods and especially meditation.
It seems you have had some amazing support around you - not just the love of your family. I am just so happy you have blogged and are moving forward with a plan.
All the very best.
Maria333
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Hi Amanda
Great to hear from you. Sorry you have had such a hard time. Hopefully the tumours will keep shrinking and it will all be worth it. Definitely all for 'living in the moment'. I didn't do anything for my 40th birthday and was then diagnosed just before I turned 41. I now intend to celebrate each and every birthday - hopefully, a lot of them!
I'll keep sending my positive thoughts to you.
Happy belated birthday.
Amy x
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Hi Kathy
I run everything past my oncologist. She is OK with the Chinese medicine - I do accupuncture weekly and take herbs - i have them all listed but there are none that they really know anything about with respect to contraindications so they don't say no. They are a little more stringent with things like antioxidants - vitamin c mega doses, echinacea, Co Q10 etc... - there is a list we were given of things to avoid. There is actually quite a bit of positive research with accupuncture so they are quite OK with that. I also get them to do more detailed bloods every now and again to check things like my calcium, vitamin D and iron levels. My onc is aware of my diet and OK with it so long as I am still enjoying food and not losing too much weight (I am struggling a little to maintain weight - for the first time in my life!) So I am keeping a close eye on this and very focused on ensuring I get enough protein each day.
Meditation is wonderful but challenging. Like all life changes it is taking practice and committment. I have done an introductory course into mindfullness meditation and am open to trying other techniques and groups. Finding some stillness in the day and among all of the busyness both in life and in my head is amazingly beneficial though I do find it difficult with little children to find a significant amount of time to devote to this so I am trying to have few expectations and just commit to a daily practice and go from there.
It is very difficult with the children. Since my secondary diagnosis we have possibly been a little less open about the extent of things. We have tried to keep it simple and based around the practicalities of what it means for them - i.e. mummy having treatment weekly, needing extra help in the house, grandparents staying to help etc... My son who is 4 thought he had caused the cancer too as the day I had my mammogram he and I fell down the stairs! My 6 year old daughter has found it very difficult and has been very teary, clingy at school and having lots of psychosomatic pains - in her tummy, head etc - she was never like this before. My eldest daughter who is nearly 10 has been very stoic - she doesn't talk about it much and hides her emotions from me quite a bit - we were very focused on my finishing treament so to have to have more hit her hard and she got very angry about the disease and wishing it would all just go away and things be the way they were. We just continue to say that we and the doctors are doing the very best that they can to keep mummy well and that means having the medicine every week, that we don't know how long that will be for and that the medicine can only be given at the hospital as they don't have a tablet. And that unfortunately sometimes the medicine makes me feel tired and a bit sick in the tummy and makes it harder to fight germs sometimes which is why I ended up in hospital. It's hard but we try to be open with them and honest and direct in answering their questions.
I wish you the very best.
Amanda xx
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Thanks everyone!
It's funny - I was reflecting on how much I disliked the term "journey" in relation to cancer but I have been unable to come up with anything else that is really suitable. It just all sounded a little twee to me. But.... that's what it is. I also dislike the idea of "fighting" the cancer - I'm a non confrontational person - I don't like the idea of fighting my body, just like I don't call it my cancer. I have cancer in my body - it has come from within my body. I am choosing to think of it as the medicine is there to kill the nasty cells and my mind and body are there to get everything into shape to ensure my body becomes and stays hostile to the cancer wanting to reemerge. I know many will feel this naive but I believe it - it's been done before and can be done again. I am not turning my back on what is very good medicine but ensuring that I too contribute to it's success. There is so much research going on in Her2+ve cancer I have to believe that we can benefit from that too.
Love and light to you all!
Amanda xx
Amanda xx
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Hi Amanda, It was so good to hear from you again, you are always in my thoughts. So sorry to hear the treatment has been harsh on you but a big YAY for how the tumors have shrunk that is wonderful news. I have now reached that mountain top we talked about( finished rads on Thurs) and will now sit and wait for you. take your time my friend, I know you can do it. Take care. Oh & I almost forgot sending you happy belated birthday wishes.
Loretta xxx
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Hi Amanda
I can so relate to how difficult it is with children. My daughter has just turned 4 (having her party tomorrow and I have just finished decorating a load of cupcakes with butterflies on them) and my son is 2. They know that I go to the hospital for treatment ; that I sometimes get very tired and need to rest; and that my right breast is 'ouchie' (I had a mastectomy on 21 Dec last year); and that sometimes my medicine makes me feel yuck (particularly radiotherapy which I've had 3 lots of and which just does not agree with me - nausea, fatigue etc).
I haven't had to go the chemotherapy road yet. I'm trying a second lot of hormone treatment and will know in a couple of months whether this one is working or not. If not, it will then be chemotherapy. I'm trying to stay positive and hopeful that the hormone treatment will stabilise my secondaries, even just for a year or two. Trying to put off chemo for as long as I can!
I've also done a course in mindfulness meditation. I try to practice every day but it is difficult with 2 small children. I do find that it does help me though. Even when I feel panicky sometimes I use the techniques, breathing, visualisation etc to help calm myself. I'm contemplating acupuncture to try and help with my hot flushes which keep me awake at night.
Anyway, I've raved on enough!!
Take care and know that we are all thinking of you.
Amy x
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Wow Loretta - you are there at that mountain top - I'll bo so grateful to see you at the top. I can't see it yet as I have no end date for my chemo. It is going to be weekly, ongoing... I will only come off it if the disease progresses (and then onto another cocktail) or if I take myself off the trial. My oncologist says that there are a couple of women on the trial who are showing no signs of disease who are discussing coming off the trial - then most continue with herceptin forever too. I have been doing lots of research into treatments and trials in the US and am glad to see so much happening in research for women with Stage 4 disease. There are many of these trials happening here but the treatments available off trial are relatively minimal - meaning the ones the government covers on the PBS - if you are willing and able to pay you can increase your treatment options. Anyway - I'll pop off my soapbox for now and dream of meeting you at the top of the mountain - enjoy the view - when I get there we are going to have a lot of catching up to do - thank you for you belief in me.
Have you celebrated your reaching the peak in any way?
Hope you are enjoying the view.
Amanda xx
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Hi Amy -
I hope your daughters's birthday party went well - Butterfly cupcakes - yum!
I hope that you find the hormone treatment is working - it would be nice to avoid the chemo if you can. Do you get a bit of help with looking after the house and the kids when you are tired? I don't think I could have coped without some of the help I have now.
I don't get much time to meditate on the weekends - last night I feel sound asleep - not quite the stillness I was after! I am looking forward to a nice quiet time tomorrow - hopefully the weather will be nice - I thought it would be nice to be outside among nature for a bit and the kids have school.
What state are you in? thanks for keeping me in your thoughts - you are in mine too.
Amanda xx
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