A little more Black and white
You see with every progression there is the feeling that you are a little further down the slope, that little bit further, harder to claw back up.
I've always, felt, deep down that I can handle this. That this disease can be managed for some time as a chronic illness while of course never forgetting the possibility of the miracle. (I know living breathing miracles, I could be one!) that I could influence my outcome with great approach to diet, exercise, spiritual and mental health in addition to great medicine.
For the first time I feel real doubt. This, I suspect is because I have started to become symptomatic. Nothing major but it's there, the infrequent dry cough, the funny feeling in a certain part of my chest. Yes, I can still do a 1.2k ocean swim (slowly but determinedly) but there is really no way of still saying its hay fever or the post viral cough - it's the mets.
My boy starts prep in a few weeks. The very thought of having to leave early breaks my heart. The thoughts of him and my girls negotiating their journey to adulthood in the absence of their mother tears me up. However, we are not unique. Families have coped with death premature and otherwise since time began. It is how life works - you are born, you live and you die - none of us a guaranteed tomorrow. Cliche and shallow comfort. I am forever telling them how they hold me in their heart - the girls get it, my boy stares blankly. I was sleeping the other afternoon and just stirring when he came into my room, quietly hopped on the bed kissed my cheek and jumped off to play with his lego. I just hope he remembers how much he loved me and I him.
It is thinking of how this is just how life works that brings me back to today. I am here right now. Busily still working on those photos I've talked about before - (sometimes being a photographer is a curse) - cherishing the memories of our Itslian trip. Preparing everyone for a return to and commencement of schooling, enjoying the holidays, summer sun, beach, doing nothing time, reading (3novels so far and loads of trashy mags)
I am glad I come back to this - the wallowing never last long but it would be false to say it isn't there - to only talk of the "up" stuff that makes everyone feel better. I have a number of friends going through rough times dealing with their cancer at the moment. I have friends with few options left, with pain and disability - I feel sad for them, for their families, for me for my family.
So there is a plan. I have been fortunate to be granted compassionate access to the drug pertuzamab (perjeta) which is a monoclonal antibody used in combination with herceptin and chemotherapy - it is a drug for her2 positive women that aims to further block the Her family pathway. There had been a thought all along that in my case, blocking her2 with herceptin has never been enough, that something takes over to continue to drive the growth of the cancer. I will be one of very few australian women who have access - I am beyond grateful. (It is highly unlikely that this drug will be available at oncologist's discretion for some time - there are still significant limits on the use of herceptin snd tykerb)I will try it in combination with a chemotherapy. It will take a few weeks to come into the country so in the meantime I will start the herceptin and chemo and in my second cycle add the perjeta. I will continue to ficus on and revamp my lifestyle routine to cope with the new drugs, I will continue to swim to strengthen my aerobic fitness (I'm registered to swim the Mt Martha Australia Day Swim), I will cycle and walk and meditate and hopefully find a yoga instructor I am happy with. I will continue my accupuncture and TCM. I will continue to hope. I will continue to live. I will continue to love.
May we all have health and love in 2013.
Comments
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Hey Mandamoo
I thank you once again for sharing with us. I am so glad we can be here for you and glad that you do not feel that you have to fill us with just the "up" stuff. I believe it is good for our soul to be able to share our thoughts and feelings. Keeping it to ourselves isn't a good thing.
Congratulations on being able to have access to perjeta. I hope it gives you new hope for a long future with your family, friends and loved ones.
Keep on enjoying all the good things in life. Good luck with the return to school of your children.
Lots of love and good wishes coming your way.
Mich xoxo
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Hey Mandamoo
I thank you once again for sharing with us. I am so glad we can be here for you and glad that you do not feel that you have to fill us with just the "up" stuff. I believe it is good for our soul to be able to share our thoughts and feelings. Keeping it to ourselves isn't a good thing.
Congratulations on being able to have access to perjeta. I hope it gives you new hope for a long future with your family, friends and loved ones.
Keep on enjoying all the good things in life. Good luck with the return to school of your children.
Lots of love and good wishes coming your way.
Mich xoxo
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Thank you for your responses - I often wonder if many read my posts. I wonder if I am too scary - the taboo topic? So I am grateful that my posts reasonate with you and maybe give you something to make each day better. Wishing you both well. A xxx0
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Thank you for your responses - I often wonder if many read my posts. I wonder if I am too scary - the taboo topic? So I am grateful that my posts reasonate with you and maybe give you something to make each day better. Wishing you both well. A xxx0
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Thanks for sharing your thoughts with us.I think of you every time I log onto BCNA-which is most days.I like to read your blogs and know that you are ok. They are not scary but rather honest,insightful,eloquent,a little sad yet often joyous.I hope you are compiling your blogs into a book because you have such a talent for writing.I think many of us on this BCNA network will,at some point,travel down the secondaries path.You give us hope,courage,information but most of all an honest picture of what it's like to be a loving mum with young children and living with secondary bc.I hope and pray that they strike the right drug combination to give you more time. Many hugs and love,Tonya xx
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Thanks for sharing your thoughts with us.I think of you every time I log onto BCNA-which is most days.I like to read your blogs and know that you are ok. They are not scary but rather honest,insightful,eloquent,a little sad yet often joyous.I hope you are compiling your blogs into a book because you have such a talent for writing.I think many of us on this BCNA network will,at some point,travel down the secondaries path.You give us hope,courage,information but most of all an honest picture of what it's like to be a loving mum with young children and living with secondary bc.I hope and pray that they strike the right drug combination to give you more time. Many hugs and love,Tonya xx
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Thanks for sharing your thoughts with us.I think of you every time I log onto BCNA-which is most days.I like to read your blogs and know that you are ok. They are not scary but rather honest,insightful,eloquent,a little sad yet often joyous.I hope you are compiling your blogs into a book because you have such a talent for writing.I think many of us on this BCNA network will,at some point,travel down the secondaries path.You give us hope,courage,information but most of all an honest picture of what it's like to be a loving mum with young children and living with secondary bc.I hope and pray that they strike the right drug combination to give you more time. Many hugs and love,Tonya xx
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Hi Amanda, I agree with everything that the other ladies have said (so glad that we all think the same). I too am trying to stay "one step ahead" by being as healthy as I can. You just amaze me. Do you amaze yourself? I suppose not as when "you have to - you just have to". How wonderful that you have the "guts and stamina" to do the extras. It sure is a full-time job trying to stay well let alone be a mother, wife etc etc. and doing it as well as you do. It confuses me to know that you and others are "struggling so hard" while others in the community just cruise along and waste their precious time.... It keeps bringing me back to "Living in the Moment". We all have our purpose on this earth - some just to show others "how to get the most out of their life by living through challenges". I have been so fortunate to know a lot of these people and extremely grateful to call them "friends". Keep on being who you are and never stop sharing your challenges and triumphs - these are gifts to all who you encounter. The people and things that have the most impact on our lives are never lost to our subconscious mind. They stay there forever. The strength you have in knowing that you are "doing the best possible route to health" will keep more options coming your way especially until your goals have been met. Blessings to you XLeonie
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Such lovely words of wisdom Leonie. I have the stamina because I have help around the house with household tasks and the kids when I need to rest or get to appointments.
Living in the moment can sound quite twee but it is the only thing that really gets me by in the end. That's not to say I don't worry about the future - gee I do and I get scared. I do get envious of others who seem to have it easier - but who am I to know their true battles for some people who don't know me possibly look at me in the street and have no idea of my reality.
I didn't want to make resolutions but my motto for this year is to try and 'live fearlessly' as fear of so many things is crippling and I to me fear is my enemy. So much effort can be put into trying to do the "right" thing that more fear is cultivated. Now that doesn't mean I stop trying to be healthy it means doing it because it helps me feel good and better able to get the most of what each day has to offer.
A xx0 -
Amanda
The reflections and insights in your writing about what you are experiencing are so incredibly honest and inspirational. You are very generous to share these thoughts with the BCNA network and I am sure many many people in our network greatly appreciate your contributions. Reading your entry from Jan 12 gives cause for reflection on our lives and what is most important.
Thank you
Maxine
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Thanks again for sharing....you write so well and I am always tearing up by the end! It is so unfair that you have to deal with something like this. I truly hope that the Perjeta works for you xx
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Thank you everyone for your comments - writing here is therapeutic for me too. I'm happy sharing is beneficial in some way.
Started the 'juice' Tuesday so I'm a little jittery from the steroids and have that familiar hungover feeling but still going ok. Looking forward to adding perjeta next cycle.
A x0 -
Sorry to hear you have to explore more treatment options so soon again. Living fearlessly although not easy is the most liberating thing we can do. I am grateful for your honest sharing and letting so many on this site have a little insight of what many of us experience in this travel with advanced breast cancer.
Praying for you as you commence perjeta.
Xx Donna
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