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
