Change in plans

the oncologist agreed. we can stop the chemo. the balance of possible eradication of stray cancer cells versus quality of life has tipped severely now, and she agrees that it’s not worth it.

There are no studies, anyway, that show that 6 cycles (18 weeks) of Xeloda post-surgery and radiation are more effective than 4 (12 weeks), or even what the suggested treatment regime should be. We struggled with this in March, again in August, and once again today. This treatment was all a best effort kind of thing, a hope that after the surgery removed the thirteen swollen cancerous nodes that the chemo would scrub my blood and organs clean, killing the escaped cancerous cells before they could swarm and divide and form new tumors. This was our best effort (particularly since the other drug, Avastin, failed to win FDA approval in September), and we have given it our best shot. No, more than that. We have completed 5 cycles (15 weeks) of ups and downs, ins and outs, nausea, vomiting, stomach cramping, throat sores, fatigue, napping, exhaustion, foot sores, tenderness, and peeling, slippered preschool pickup, isolation, loneliness, chocolate cravings (week 3), loss of appetite (week 2), inability to eat meat, warm food, shredded wheat or crackers (all weeks), constipation (week 1), diarrhea (week 3), and a general occasional bitchiness that I blame on the fatigue and pain.

Oh yeah, the pain. Somewhere last week I twisted my upper back again and today was simply impossible. After trying to sleep the pain off yesterday, I woke today in so much hurt that I couldn’t concentrate on a short talk with my husband. I broke down and admitted the pain, high in my spine, that I had been trying to hide, and he helped me call the doctor and choose a pain pill, and then he tucked me into bed with a cold pack. I was no better hours later, crying that I couldn’t see through the pain, and we upped my dose and made a plan to talk to the oncologist about it today.

Long story short, the resident ran some neuro tests, we talked about my history, and he and my oncologist recommended that we stop the chemo and give my body a chance to heal. It’s been under a lot of physical stress this year (9 months since the tremors that signaled a change), and it needs a break before we can start the endocrine therapy again.

Her directions were: Stop the chemo. Rest. Relax. De-stress. Give yourself a break. After the holidays, we’ll focus on eating right, beginning again to exercise, and start the Aromasin again, to deprive any remaining cells of the estrogen they feed on. But for now, de-stress. Give your body a chance to recover, so it can withstand the Aromasin again and start to exercise and grow strong again soon.

Those were the words she said, but all I could hear was their impact: I can spend Christmas with my boys, and hopefully have enough strength to celebrate.

Hallelujah.

I celebrated with the last of the cupcakes and tucked myself back into bed when we got home.

39 Responses to Change in plans

  1. magpie says:

    Big (gentle) hug, Susan.

  2. amy says:

    Hallelujah is right.
    xo

  3. You know…I’ve heard that cupcakes have a restorative property making them the perfect endocrine therapy alternative. NIH has it all over their website. You don’t have to go look, I’ve done all the research. : )

  4. Stimey says:

    Hooray for a break for you! So happy.

  5. Stella says:

    I’m very glad you’ve been given a reprieve, Susan. It’s always important to know when enough is enough, already!

    Love you!

  6. Lindsay says:

    Awesome! I’m really glad. Enjoy your recuperation!

  7. Amy@UWM says:

    Hallelujah indeed. So much relief wrapped up in that one word. Hope your back gets better soon — I’ve been dealing with a herniated disc, so I know just how not being able to see through the pain feels. Here’s to a restful holiday season. And I agree with Devra about the cupcake thing and in fact, I’m pretty sure any kind of chocolate has magical restorative powers. It’s on the ACS website. Don’t bother to check…just take my word for it…

  8. Bon says:

    hallelujah. i’m glad you had cupcakes to come home to.

    i’m glad you get some respite.

    i hope those cells are gone gone gone. and i hope the pain is gone gone gone and soon.

    gentle hugs and happiness.

  9. That sounds great! Rest. Relax. Have fun.

    Hope you have a wonderful Christmas!

  10. Melissa says:

    Restful and restorative thoughts coming your way, Susan. Many hugs, too.

  11. I love those words: Rest, relax and de-stress!!!

    Oh and heal. Healing, healing, healing.

    Healing thoughts sent with lots of love.

  12. Becky says:

    Awesome. Simply wonderfully awesome! Wishing you peace and joy as you heal and spend Christmas with your family.

  13. Hooray! May you have a joyful, peaceful, healing and well-rested Christmas break with your family. And many many *MANY* more! You are amazing, and I am in awe of your strength. Love and very-squeezy-but-virtual-so-they-don’t-hurt-anyway hugs.

  14. Have a beautiful Christmas Susan! I am sending love and prayer to you and yours this holiday season. I hope you can get tons of R& R!

    Elizabeth

  15. elesha says:

    Im very happy that you are getting the rest you so very much deserve and get to do some healing before christmas is here. I think you have done heaps and its time you got to feel like you agaixx

  16. Excellent Christmas gift! (((gentle hugs))) to you and looking forward to hearing more about the cupcakes. (Devra is totally right. We got to NIH – I’ve SEEN the cupcakes.)

  17. Aunt Pat says:

    Hooray, Withing you a relaxing and pain free Christmas , Get well soon.

    LOVE

  18. Susan says:

    Hallelujah indeed, I say, very softly, so as not to disturb your rest.

  19. Laurie says:

    Yes….a break. Good for body and soul. So glad it’s happening for you and wishing you a joyful, pain-free, hopeful and fun holiday season. xo

  20. AndreaNY says:

    Wishing you a restful & enjoyable break. I hope you have a beautiful & joyful holiday season with your family😉

  21. Amelie says:

    Oh Susan, I’m so sorry for the pain. I hope you can spend a wonderful and pain-free Christmas with your family.

  22. Robin Hurwitz says:

    Good. Relax and enjoy the holy days and all they mean to your family. Heal. Sleep. Repair. Be.
    You are in our prayers.

  23. Jennifer says:

    More gentle hugs, and joy that you can rest and recover and enjoy the holiday. Lots of love to all.

  24. Joanna moore says:

    Hi Susan,

    Your Christmas will be so much sweeter while you are allowing your body to heal. Healing will be a great gift for your entire family. I discontinued Tykerb for a period of time when my body had a problem healing from a persistent wound. Now I am back on it and I can tolerate the drug so much better. Your body doesn’t have the reserves to deal with the Xeloda right now.

    Merry Christmas to you and your family.

  25. marty says:

    It was my enormous baby, wasn’t it? The baby carrying gotcha. I don’t blame you though. Who could resist him?

  26. Amanda says:

    Wishing you such joy—filled with cuddles, cupcakes and can-do’ness.

  27. C. Mom says:

    I am so glad that you will have this time to rest. Sending you lots of hugs, xoxo

  28. Margaret says:

    Still praying for your healing, and for a heart filled with peace, and for a happy Christmas full of cupcakes, love, and faith in a long future full of more cupcakes and love.

  29. Andrea says:

    What a beautiful Christmas gift for you to give to your family, Susan. Enjoy!❤❤

  30. Deb says:

    Take care, sending a hug and a prayer your way.

  31. JoC says:

    Her directions were: Stop the chemo. Rest. Relax. De-stress. Give yourself a break…. were the words she said, but all I could hear was their impact: I can spend Christmas with my boys, and hopefully have enough strength to celebrate. — Yay! Very gentle hugs!

  32. Becky says:

    Wishing you healing, hugs and hot cocoa this holiday season. Rest and snuggle with your family around the fire. Glad to hear you get a reprieve and can focus on enjoying the holiday season. Sending love and good thoughts your way, Susan. And I love your eloquent postings, here and on Facebook.

  33. […] had made the decision to stop chemo.  Just yesterday, we – my family – made the same decision to stop chemo.  To stop the treatment that may be saving my life because it was taking too much of a toll on my […]

  34. jodifur says:

    Susan I wish you so much peace and strength and love and joy this holiday season. Please play with legos and rest and have cocoa. Let’s plan a playdate for Michael to come over and we can lay on the couch with warm blankets and I will wait on you hand and foot.

    Much love.

  35. […] Edwards had made the decision to stop chemo.  Just yesterday, we – my family – made the same decision to stop chemo.  To stop the treatment that may be saving my life because it was taking too much of a toll on my […]

  36. Ella says:

    Yay for a rest and a break! Wishing you much peace and time for gaining strength over the holidays x

  37. […] Healing Somewhat against my instincts toward wallowing in the mud of uncertainty, I have listened to my patient husband and soft-spoken oncologist and followed their advice this week:  Rest.  Relax.  Heal. […]

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