Chemo day 4. And chemo day minus 3.

friday3

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.

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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.

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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.

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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.

friday1

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.

friday4

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.

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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.

friday7

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.

20 thoughts on “Chemo day 4. And chemo day minus 3.

  1. Elizabeth, I only know you from Elizabeth Foss’s blog, but the sock posts she wrote inspired me to start knitting, so really, YOU inspired me to start knitting. Thanks for that! I pray for you many times every day and your sweet family. I hope and pray that God will give you strength and courage and healing.

  2. Oh! That song is amazing! Mesmerizing, too, like the cup song from Pitch Perfect. (or is it Perfect Pitch? Whatever.)

    I think any beverage that is a medical test drink is bound to be beyond hideous. Or maybe any drink that comes with instructions is bound to be hideous. I think nursing something hideous for 90 minutes should be illegal. Someone needs to go to jail.

    I’m glad about the new chemo head wrap. Sad that you’ll need it.

    How I hope and pray this new chemo has the cure without the Neuro damage!

  3. No matter where we are I will keep you in my heart…because you will never walk alone. I think I know what George loves about this song. ❤ Oh, Elizabeth, I can feel the hurting in your words, and love the joy and humor you write into it. I am so glad you have your books, and love those precious boys with their great new teachers. I forget sometimes what a privilege it is to educate my kids. But, the most important job we have to do is be a mom to these kids trusted to us, and you are doing an incredible job. If it matters at all, I vote for hot pink kool-aid hair, and luxuriously long lashes 😉

  4. DO NOT GIVE UP. I WAS DIAGNOSED WITH A BRAIN TUMOR MALIGNANT AT THE AGE OF 27 WITH A 4 YEAR OLD SON AND 30 YEAR OLD HUSBAND. AND TOLD I WOULD NEVER MAKE IT 10 YEARS, WELL THAT WAS ALMOST 11 YEARS AGO. I CAN’T SAY THAT IT HAS BEEN AN EASY ROAD WITH SEVERAL BRAIN SURGERIES THAT HAVE LEFT ME FAIRLY DISABLED. WHO EVER THOUGHT I WOULD BE SAYING THAT ABOUT MYSELF, BUT JUST THIS WEEK THEY MADE A SCRIPT CHANGE THAT SEEMS TO BE BRINGING MY CHRONIC PAIN UNDER CONTROL. 10 YEARS OF PAIN EVERY DAY! IT IS ONLY IN THE LORD’S TIMING THAT THINGS HAPPEN AND WILL. I HAVE BEEN PRAYING FOR YOU FOR SOME TIME NOW, AND WILL CONTINUE.
    GOD BLESS AND KEEP THAT BEAUTIFUL BALD CHIN UP! IN THE NAME OF CHRIST.

    ANGELLA BUNDY

    “It is for freedom that Christ has set us free. Stand firm, then, and do not let yourselves be burdened again by a yoke of slavery.”

    Galatians 5:1 NIV

  5. Gentle hugs. Cocooning you and your precious family in prayers. I too discovered your blog through Elizabeth Foss’ blog. Thank you for gentle, generous and courageous heart.

  6. Prayers for you on my rosary and at Mass. Prayers that new drug does the job with no neuropathy — especially in your hands. I thank God every day that I still have my hands!

    If there is anything you need, please say the word.

    Oh, and thanks for yesterday’s laugh. I really laughed and I’m sad to say I haven’t laughed in a while!

  7. Elizabeth, I will pray for you and light a candle for you at church today. I’ve never met you, but I just know we would be friends if I did! 🙂 You are an inspiration to me each time I read your blog. From your love for your children to your tireless advocating for orphans, you are my hero! I have four children of my own, and I wish I could help you in some way, besides donating to some of your “families,” which I have been happy to do, and praying for you. But I know prayer is the best. Please know that you have so much prayer surrounding you. . .

  8. I had a friend in High School who never grew lashes in the first place. Idly wondering if Latisse would work in her case too… Can’t recall if she was also missing brows.

  9. Elizabeth, I am praying for you and your family. Every single day. You are a brave and beautiful woman with such a wonderful family.

  10. Dear Elizabeth,
    Not sure how I came across your blog except I also have a child with Down Syndrome I just want to you know I pray for you all the time. When I was in Jerusalem this summer I left a prayer in the wall for you, and I will continue to pray. You are an inspiration and a wonderful mother. Thank you for your blog. Love, Carol From San Diego

  11. Good morning to you from Minnesota. Your positive energy, strength and love for others is such an inspiration. I have followed your blog for years, and we emailed back and forth briefly when your daughter was trying to decide on schools. My nephew, N. Taylor Brockman graduated from NC School of Science and Math, and his company gives scholarships to students each year. He just started another really cool company in Mount Pleasant called InnoLabs, http://www.innolabscharleston.com, and if your big kids would be interested in visiting, please let me know. Taylor is a love, and gets very excited at the prospect of young minds creating new ideas. Sending you love and as big of a virtual hug as your body can handle!

  12. Oh Baby….I am 12 weeks out from 21 weeks of chemo for leiomyosarcoma…and just starting to have some serious hair back on my head again! I’m so sorry you need to say farewell to yours again for a little while. But YEAH for the eyelashes! Mine are still missing….

    I found you through Reinventing Mama and Elizabeth Foss – I’m holding you and your family up in prayer.

  13. hugs and good thoughts and wishes for drugs that work without side effects. and good health. because if Gd can do anything, why not ask for it all.

  14. Precious Elizabeth,

    Not sure why, precisely, but typing to you makes me feel better. I guess it’s a kind of prayer, and I know you can hear my prayers now.

    Anyway, just wanted to tell you this. I’ve loved the EPCS ever since you posted it. I’ve tried all kinds of ways to have the song on my phone: one phone recording as another phone plays the song, apps that are supposed to audio-capture from YouTube, etc. Nothing was good.

    Then just the other day I wondered if Amazon might have the song, since the YouTube says the song is available in iTunes. (I’m not an Apple gal.) Lo! I looked on Amazon and the song could be mine, on my phone, for less than a buck & a half! I immediately pressed BUY WITH ONE CLICK.

    So now the song is on my phone. Even better, it’s now my wake-up alarm song. It’s as if you awaken me every morning at 5.

    Missing you lots, & love from Rhode Island straight to Heaven, Esther

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