I have spent $220.00 on getting my eyelashes to grow. That’s two boxes of Latisse, a medicine that really and truly makes your lashes grow back no matter why they left in the first place. Mine never did come back between the last two times I was bald, so I decided it was worth the investment. Only to find out last week that i have failed my latest chemo cocktail and that my new one will, again, make my hair fall out. Some people can keep their eyelashes all through chemo with this Latisse medicine, so i’m going to try, at least as long as this box lasts.
The hair on my head, though… that’s going to be gone. But here is one of those little miracles that I love so much. Some of the ladies at church knew I was concerned that my chemo wasn’t working, but I obviously hadn’t had time to tell anyone that I was about to become shiny-bald again VERY fast. But I guess the Holy Spirit must have whispered into Denise’s ear, because the VERY day we got the news about my new treatment, there was a bag left, silently lest the doorbell wake up my night-shift husband, with the prettiest new chemo wrap, exactly my colors, and so soft and smooth. Right after your hair falls out, because of all the inflammation in your scalp from the chemo, things you put on your head have to be really non-itchy and non-picky…. This pre-tied scarf is designed for brand new hair loss, there’s not an exposed seam anywhere inside at all. And here’s another beautiful thing… the company that makes these, http://www.goodwishesscarves.org/ includes a beautiful card signed by everyone in the company, and these folks obviously really understand cancer. Great organization that I’d never heard of before.
So I have been spending these last few days before starting a really scary new drug just trying to recover from my most recent chemo and to decide what’s most important to me to invest my time and energy on. Mostly it’s my babies. This photo was from the first day of school. Danny has a new (used) power chair and george loves to ride on his lap while they are waiting for Danny’s nurse and the bus. They are both thriving with new teachers and doing really, really well. It’s still terribly difficult for me to send them away to school-school, especially when all my friends are posting so many wonderful homeschooling stories, but I am trying not to let my separation anxiety get the best of me.
So this new chemo has two big potential problems for me (and a few more that apply to everybody, but these are my biggest concerns. It can cause a serious heart rhythm problem, and I have already been in the ER a few times and am on medications for arrhythmias, caused by chemotherapy. I see a super-specialized cardio-oncologist to manage it all. But he said he thinks we can do this one , despite the risks, with very careful monitoring. The bigger problem is neuropathy. This chemo causes nerve damage in your hands and feet. There are ladies in my stage 4 triple negative breast cancer group who have been on it and are still on it who are no longer walking, no longer typing, no longer able to hold a pen. They sure can’t knit or change diapers. So you see that photo above? That’s the beginning of the kitchener stitch on a pair of socks for a dear teacher friend of mine. I have been photographing every step of the way, in order, so that i can put up instructions on how to make hem top, non-ribbed, short row heel and toe prayer socks while i can still knit and type. Actually, i’ve photographed every little step closely enough that Ann Onymous, being a sock knitter herself, could probably reconstruct them and make the post for me if i run out of energy.
But anyway, (and this is the sad part) most folks who get this neuropathy from this drug can’t tell you whether it goes away or not once you stop the drug, because once this drug stops working, they really don’t live long enough to know for sure. Sigh. That’s not exactly how the medical literature explains it, because then nobody would want to take their expensive medicine. But other, current patients can tell you the real story. So I am trying to very intentionally prioritize my time, my knitting… and trying to guard my thoughts to prevent absolute despair.
Really it’s all about energy, or lack of energy. Reading books is hard, and the chemo before the last one has damaged my eyes… so I have learned how to burn unabridged audio books onto CDs . This way I can listen in the car, in the kitchen, and on the computer or my phone… even while i’m knitting when i’m up to knitting.
Some times I truly don’t have energy to do anything, so what brings me joy is being out of bed, on the sofa, watching and listening to all the things my boys do…. music practice is my favorite time, and going over homework, and watching George get so excited about “CLAP VIDEO AGAIN MAMA!” …. He LOVES this video and he knows that if he snuggles next to me very, very carefully and holds the laptop absolutely still on his lap, we can watch it together.
So this morning I had a CT scan from my chin to my knees, it won’t change the plan of this new toxin on Wednesday, but it will tell us how much ground we lost with 12 weeks on a plan that didn’t work.
I hate drinking this stuff. especially post chemo day 4. Bad plan. Then early next week we will try to get some three dimensional measurements of the main tumor with ultrasound to give us another way to follow it. I think they should just ask me… when it’s smaller, it just hurts. when it’s bigger, it makes my arm go numb when I let my arm touch against my chest. How much more objective do they need to be???
So that’s the latest. Dixon’s working this week, so he will be off for the whole first week of the new chemo. Emily’s coming home next weekend to be with me. if I still have hair then we might do something radical with it, or at least dye it bright red or something. Oh, and watch for those ebay auctions…. two pair of socks ready to go up as soon as i have the mental energy to get the right photo with the right words.
love and hugs.