I have this notebook… I started filing EVERYTHING in it as soon as I got the paper copy of my pathology report back in September. Lab reports, medical journal articles, information about my chemotherapy. 20 weeks ago on Tuesday I had my first infusion day with my new chemo.
So I explained back in October that I have stage four triple negative invasive lobular carcinome. Stage four means metastatic, incurable, and triple negative means that my cancer isn’t vulnerable to anti-hormone treatment or herceptin. If you think about a Venn diagram of breast cancer, there would be just a little spot with overlap between the stage 4 part, the triple negative part and the invasive lobular part. So most of the statistics in all the articles don’t apply… usually they are talking about easier to treat or easier to keep track of cancers.
But I am in the lucky group that responded to my chemotherapy. Less than a quarter of patients in my group do. However, when you look at that lucky quarter, the next statistic is this: how long does this chemotherapy keep working?
There are too few of us, the stage 4 triple negative invasive lobular people, among that group of responders (this 31 percent counts everybody, not just my group) to publish many statistics specifically for this drug. Besides, if they did publish them, they would be really depressing, so we’ll look at these instead. This chart means that in the group for whom the drug worked, it kept working, on average, for 21.9 weeks. (which is way better than the best statistic for people in my group for their first new chemo, which ever one it is, which is that it tends to work for about 15 weeks) So when it stops working they switch to a different drug or combination or whatever (which on average works half as long as the first one)… I hope this makes sense, if it doesn’t, just know that so far I am in the lucky group. But the other trouble is that because my cancer is the invasive lobular kind, it is REALLY hard to track with scans and things. Sometimes we have to look for non-cancer clues, like blood work being out of kilter, or new blood clots or things. And I got a new blood clot in my chest a couple of weeks ago, which sort of stressed me out.
So here’s the dilemma. Realistically, there will come a time, if it hasn’t already, that my new chemo isn’t going to keep things under control anymore. So they will start something else. They did fancy mutation tests on my tumor to know what would be smart to do when that happens. But whatever it is, it will be harder to deal with and more toxic to the rest of my cells that my current chemo. I will be weaker and sicker. So I decided it was time to do some decluttering. My plan is, within the limits of my strength and energy, to go through 25 years of fiber art materials and unfinished projects and equipment, and if it’s not worth my time to finish it now, or if it doesn’t make me happy just to look at it, it’s OUT OF HERE. This is hard. Very depressing. But among the baskets and box I went through today (and my energy is REALLY limited) I threw out 1.5 bags of stuff that nobody else would want either. and found two almost finished sweaters!
All this one needed was to have the ends woven in! I think I started it for Sam when he was maybe 10? I remember dyeing the wool… so it’s washed already, to see if it might fit danny, otherwise it can be carefully put away for George.
And look at this one! All that’s left is one cuff! Handspun singles, cashmere merino silk, dyed after spinning… and I found the rest of the yarn, too.
But of course none of the color for the cuffs. So I am going to look through old notebooks and see if I wrote down anywhere what dye recipe I used. I would think, after putting so much time into spinning such valuable fiber, that I would have jotted it down somewhere…otherwise,I obviously have enough to experiment with. The problem is the time and the energy. And the buttons. It will need really special buttons.
And after tossing the trash, and rescuing the sweaters, there are still two boxes of just stuff. UFO’s I had forgotten about, lots of beautiful yarn,too nice to toss but not quite organized enough to give away. Or maybe I’m not ready to give it away yet. And this is just the beginning of my decluttering… there are many boxes, baskets and bags to go through…. which brings us back to the time and energy problem. This has been my off week for chemo, my best week. (hah) and I start back on Tuesday. Sigh. And I really don’t want anybody else to do this for me, there’s a lifetime of memories and treasures, it’s my work.
But I guess progress is progress. I am becoming more serious and deliberate about doing what I want to do while I can do it. Next on my list is saving one more orphan with Down syndrome. My plan is to take all the good stash yarn and put it on ebay for fundraising. Last time I put socks and yarn on ebay to help a dfferent family save the lives of three little boys, one of the pairs of socks raised 300 dollars! But seriously, approaching the top of my bucket list (athough I hate that term….let’s call it my make-a-wish list) is to get this new family fully funded so they can rescue their child. They will be fundraising on Reece’s Rainbow, but first they have to get their formal approval from the government of the country where the child is now… and that costs THOUSANDS of dollars.
It’s this family, so if you know them and you know the whole story and about their child, please keep it a secret. Tomorrow I will tell you about my dear friends Faith and Dennis Mauro-Huse and how they are helping me with this particular make-a-wish goal. But meanwhile, if you want to participate, even before hearing the whole story, I have this little tiny amazon.com clicky thing way up top on the right side bar. If you are going to buy anything through amazon, and you click that link to go to amazon before you buy, and if you put the stuff in your cart and finish your transaction within 30 minutes, a percentage of your purchase goes to save this child’s life. How cool is that? NO money out of your pocket, but a family united and a life saved (and my wish granted…) If you need to be more philanthropic, you can go to here
Have you noticed I’m sort of on a roll with this blogging thing? That’s another one of my make-a-wish goals. I won’t go into why, exactly, or I’ll start to cry. But I’m sure you understand. So you can be confident that I’ll be back tomorrow and will tell you the whole story of this wonderful family.