A little more Black and white
So the follow up scan cleared things up for us - the tumors are growing slowly on tdm1. So the drug is no magic bullet for me like it has been for some others. The progression is mm but enough to show a trend and reason to be taken off the trial. I expected it so I'm ok but my emotions have still been flat.
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.
