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Treading uncertainty

The last few weeks have been challenging... Really the last few months haven't been all that great. Friday morning I woke up to massive bleeding out of my wounds and I am not exaggerating, it was a bit disturbing and if I hadn't experienced all of the horrors over the past few years I might have called an ambulance and then passed out. Instead I flushed the third toilet bowl full of blood, changed my pads and hoped for the best. Luckily I had an oncology appointment that morning so I could potentially be helped if I needed to be. My doctor attributed it to the previous days wound care appointment where the wounds were thoroughly debrided but there was an air of uncertainty about whether or not this was the case. Luckily I stopped bleeding after noon so there is that to be grateful for and my hemoglobin, though low at 9.7 did not get me disqualified from this next trial.


Last year at this time the medicine was working and I was feeling so good, thinking this makes me want to cry but I know healing is possible so I am going to focus on that.


In lieu of presenting myself as hyper positive, I remember all that I am grateful for and that helps, as cheesy as that sounds it is more real to me than putting on a supposed brave face or never allowing a dark thought to peek out of my mind windows.


This experience is like an intense water slide, sometimes it's almost fun but then it knocks you sideways and upside down and your mortality turns the volume up to 11.


I get a liver biopsy on Thursday which will determine if I have developed new mutations. This can make more trials available which is not a totally bad thing.


If all goes well I start this clinical trial next Wednesday.


Until next time ❤️

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