It is day six past my chemo session and the side effects this time are by far worse than before. I had been told that the affects are cumulative and that each time you will feel worse, for longer, but well, quite frankly I guess I didn't want to believe it. As I sit here with the most disgusting tasting metal mouth, sores all over my mouth and throat, nausea, depression and an inability to taste anything, I wonder can it get any worse. I also wonder does it ever get any better? Is there light at the end of this long, dark tunnel? Since I didn't have any answers I reached out to a few people who would.
I spoke to Terry, probably one of the biggest IBC Education advocates in the United States as well as to Suzanne a Canadian woman who was first diagnosed in 2009. I learned a few things I didn't know and also learned a few things I did not want to know. For example, did you know that IBC has been around for about 100 years. Certain cancer agencies refused to put warnings up about it because by the time women find out it is too late and there is no cure. Imagine that! Not letting people know that something so deadly exists because you have no answers. We need to tell women about this so that it can be found earlier. I know there is no "test" yet for iBC, but there is a big difference in prognosis to find out at a stage III rather than a stage IV (IBC always presents at stage III or IV). Where normal cancer cells reproduce every 100 days or so, IBC cells reproduce almost daily so catching it as early as possible is important.
Terry is a five year IBC survivor and has had NED (no evidence of disease) for those five years as well. She said she is part of a small group, but women are living longer with IBC and she knows some women who have been as long as nine years. It takes a while for all this to settle with me, and I can guarantee it's still not settled, but what I do know is this. I now have an expiry date. I may live to be 50, I may not. It's highly likely I won't see 60 so I might as well come to grips with this and "face it like a man" OMG isn't that hilarious! Am I mad, yes! I'm extremely pissed off, frustrated, sad, angry, you name it. Those who know me know that I've always lived a large life. I have fun and am crazy and do crazy things and I love living, so I'm very pissed off that cancer has chosen me. I just want to f.....ing animate it!
Unfortunately I don't have that choice, so I have to choose how to live with it and make the best of it. Right now as I sit here feeling like a nuclear waste factory has taken root in my mouth, it's hard to be positive and enjoy things - even Haagen Dazs tastes terrible - but I know things will get better with time. They will also get a little worse over the next four rounds of chemo. I may loose my ability to type, my brain will become more fuddled than it is and the heavy doses of steroids that I'll have to start taking soon may make me go postal. My apologies in advance to those close to me. Still, there will be an end to the chemo one day and then surgery and radiation will take place and then hopefully I am done! I'm going to push through the shitty times and try to keep my eye on the prize. When I am feeling better then I'm going to start enjoying more family time and take some time to do the things I've always wanted to do, even if it means moving and downsizing and cutting back on certain things. I can't waste this time now, every day counts, even if it's just a day spent sleeping to give me energy for the days that follow, I need to do it.
I Have an Expiry Date!
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