Neuropathy is the name of what’s happening to me this week.  It’s called peripheral neuropathy, and that phrase can mean anything from a tingling in the patient’s fingers and toes, which I first experienced last Friday, to real pain, to the near-total loss of use of one’s legs, which happened to me on Tuesday night. 

I’ve been very lucky not to develop this before now, actually.  Over a third of cancer patients do develop some neuropathy over the course of their treatments, so I’m not very worried about it right now.  It’s likely just a side effect of the chemotherapy treatment that I’ve been receiving for the past 10 weeks (Taxol).  And that’s why we’re taking a break from chemo this week.  Hopefully the week off will allow my system some time to recover and the pain to diminish.

Already, my legs are responding more to me (no more wheelchair!) and I can feel my left foot.  My right foot and leg, up to the knee, is still tingling and painful to the touch, but I hope that will also resolve in the next few days.  Thankfully, although my fingers tingle, they are not painful and I can still type(!).

Our meeting with the oncologist on Thursday went surprisingly well, this development excluded, and we got to meet with the radiation oncologist for the first time as well.  IF the neuropathy resolves by next Wednesday, we will go on with the treatment and simply add another treatment on to the end, making my last treatment December 27.  If it doesn’t resolve, to avoid futher nerve damage, we will continue with a reduced dosage of the Taxol or start a new chemotherapy drug regime, which may entail a much longer set of treatments extending through January and beyond.  That would suck.

The possibility I had hoped for — going straight to surgery in a few weeks — is not a viable option at this point.  The tumor is still present and of large enough size that they’re not comfortable operating since they can’t be sure to get clean margins (those magic words mean they got all the cancer plus a bit of healthy tissue around the edges, ensuring that the cancer cells are gone) yet.  We want clean margins.  So if we must wait, we must wait.  But waiting is scary, since IBC spreads so fast.  We need to get back into active treatment on Thursday.

But first, I need to go check on my little boys and see if they’re done with their naps.  Have a safe weekend, everyone.

48 Responses to Neuropathy

  1. Stimey says:

    This sounds like tough news, but hopefully you’ll get back to chemo soon, get that surgery, and get those clean margins. Here’s hoping you can get back on your ending-this-year chemo schedule. Love to you!

  2. Clean Margins.
    OK, wishing you Clean Margins, Clean Margins, Clean Margins, very, very soon.

  3. Andrea Lawrence says:

    Have a good weekend. Mom is here this weekend.

    Lov ya

  4. Robin says:

    Sending a huge bonanza load of “just a one week delay” vibes straight to you.

    Hang in there honey.

  5. I’ve been checking in all day to see if you updated us…I’m glad its not something more worrisome and serious, and I’m hoping there is nothing more than a one week delay in chemo treatments. I will start praying for clean margins too…and soon. Much love and many hugs and tons of good wishes coming your way. Hang in there, we are all here for you!!! Give those beautiful boys a big snuggle.

  6. canape says:

    You sound good. I don’t like the news though.

    Made some Puppy Chow today and thought of you.

  7. I will be hoping that the neuropathy remits completely, that you can get back to your regular schedule next Thursday.


  8. ella says:

    Very glad to hear your legs are responding. Here’s hoping that you get back to treatment this week.

  9. Thanks for explaining everything so well. Will keep you in our prayers and wishing you well.

  10. Imstell says:

    I suspected neuropathy but was afraid it might be something worse. So glad it’s *only that*. Ha! Disappointing news on the surgery, to be sure. But clean margins are very important. At least you are making some headway and they have introduced the Rad Onc.

    I’ll keep you in my prayers as usual.

  11. whymommy says:

    “Only” neuropathy IS good news, you’re right, Imstell! It’s it funny how our perspectives change? Who would have thought that “only nerve damage” would be GOOD news?


  12. BetteJo says:

    IBC is a very complicated cancer, isn’t it? Ugh! Yes, hoping for clean margins. That’s a wonderful Christmas wish!

  13. Alice C says:

    Sending you love. Lots of love. It is all I can offer but I wanted you to know that tonight I am thinking of you and your family.

  14. bs honey says:

    Just try and enjoy your treatment free week, and as you said, don’t think about it. Easy for me to say, right?
    I wanted you to know that you and your family are still in my prayers.
    God’s blessings,

  15. Got it – bull in a china shop. Now on to clean margins. Enjoy your week off, okay? I hope you feel up to making the most of it. xo

  16. Oh, Whymommy… I’m another one of your readers who is breathing a little easier upon reading your post tonight…

    Delaying one more week stinks, undoubtedly– as do the symptoms you are suffering right now.

    But, if you look at it as “one more week” to marshall your resources, in preparation to give that cancer a few last tremendous wollops, before you proceed with surgery… Well. That’s something ELSE altogether!

    I know you can do this. I just know you can.

    Enjoy your beautiful family, rest, and give yourself time to strengthen.

    Love to you, as always, CGF and girlies 3 xo

  17. Lisa says:

    Hope the neuropathy leaves soon and takes the rest of the mean stuff with it!!!

  18. Becky says:

    Been there, done that. It WILL resolve, and you WILL get clean margins. You CAN do this! Hang in there, WM – sending you good thoughts….

  19. MammaLoves says:

    I’m reading your words and not hearing great things and yet I can’t get over how upbeat you still sound. I’m so glad.

    I’ve heard that Crocs make a particular shoe that is easy on neuropathy feet.

    Keep strong my friend. That bright smile I see every time I visit this page just makes my day.

  20. mcgearstella says:

    I must’ve been on here about 10 times to see if there was an update. While the news is not great your attitude is wonderful! I am praying for treatments to go on! I am praying for clean margins. I am praying for all of it. Thinking of you and hoping chemo comes on Wednesday…kind of weird to be writing that but I mean it! I hope you’re done with it by the 27th or really the 28th!!

    You’re doing wonderfully…your strength is beyond inspiring and your words are hopeful.

  21. Emily says:

    I don’t quite know how to respond. I believe so completely that you will beat this, but this is the first post where I really feel like I hear your doubts. Know I am sending you positive energy.

  22. Joan says:

    I can only hope that once you are on the other side of this challenge the victory will be SO much sweeter because of the trials you went through first.

    Wishing you the best in the coming week and after,
    Joan (a breast cancer “sister” and frequent lurker)

  23. juliepippert says:

    The neuropathy sucks. I’m sorry it hit you that way and has interrupted your schedule. I am glad you see it retreating. Let’s hope it does so you can get back on track. And get the tumor to shrink, so you can get that surgery with clean margins.

    My friend’s oncologist has scheduled her straight through April.

    You hang in there.

    Using My Words

  24. Bon says:

    i am sorry that the possibility of surgery in a few weeks has been taken off the table. having to wait, and fearing what the waiting will do…that’s got to be really hard.

    i sit here, wishing for clean margins and peace of mind and heart to you, along with a little bit less neuropathy so those extremities stop tingling.

  25. fizzledink says:

    Oh, WhyMommy, I’m sorry for the disappointment of postponing your surgery, and for the pain and discomfort of this neuropathy. You have been so strong and resilient through all of this, that I can’t help thinking you really oughta catch a break!!! You’re in my prayers this week.

  26. sherry says:

    Neuropathy you can do…it can so debilitating for some and “easy” for others but I’m glad they stopped treatment to give you a chance to don’t want to be crippled and in a wheelchair forever…and while a set back is never what we want, there are good things that come from this. You may be switched to taxotere for that final dose and he fact that you’ve met with the radiation oncologist is also good. It’s one day, one step at a time…and I’m glad you’re feeling more like you!!

  27. MamaMaven says:

    Sending prayers that you can get on with the chemo this week and celebrate it being over by the end of the month!

  28. Meleah says:

    You have been in my thoughts everyday this week. I am sending you positive thoughts and prayers. Be strong…I know you are made of the strongest stuff possible, so just continue to be and this too shall pass.

  29. KillerBoob says:

    thanks for letting us know. I’ve been on the edge of my seat waiting to hear. Girrrrl, I’m gonna be hoping and praying that you’re right back into treatment! now, back to the edge of my seat until Tues/Wed!

  30. NoRegrets says:

    Huh – didn’t know that neuropathy could be so severe… But at least you are getting better. Wishing and hoping for you.

  31. LawyerMama says:

    I’m diabetic, so I hear that neuropathy word all the time but I never expected to hear it from you. I didn’t realize that could happen with chemo. I’m so glad it’s improving already.

    Like Emily, I think I hear the doubt in your voice a bit now. But I know you’re going to beat this. Here’s hoping for shrinking tumor and clean margins.

  32. deb says:

    It must feel sometimes like you’re on a ride that you can’t control, can’t get off of and you’re just along for the ride. It would drive me crazy. You’re doing the chemo, doing what you’re supposed to be doing and now this. It would frustrate the crap out of me. I’m too much of a control freak.

    Hope things get better, hoping for clean margins.

  33. Joanna says:

    As always, continued vibes of peace and recovery to you, WM.

  34. PipeyMom03 says:

    WM- I know the change in schedule isn’t what you wanted but let me tell you, this is only one obstacle you’ve hit in a long time. My SIL who battled leukemia had a 5% chance of survival at one point. She had many obstacles and delays but she made it. Her strength kept her going and she had the fight in her!!!! You have that fight and I know you will get those clear margins. Just rest for one week and get ready to battle again. BE STRONG AND STAY STRONG. All the best to you and your family.

  35. PrettyTulip says:

    I’ve been F5’ing the page to get your update. I’ll be visualizing “clear margins” for you!

  36. Carrie says:

    Sending you lots of support and good thoughts to shrink that tumor!

  37. Kathie says:

    You and your family are in my prayers.

  38. Jenn says:

    Clean margins.

    My new prayer.

  39. High heels backwards says:

    Susan, I’m thinking of you. Here’s hoping that you’ll get back to chemo soon.

    Quote from Vaclav Havel: “Hope is the deep orientation of the human soul that can be held at the darkest times.”

    Hang in there!

  40. Oh wow! That’s disappointing news.

    I wish you well.

    Enjoy the little break with your babies.

  41. I love your positive outlook. I feel positive for you. Here’s a healing hug coming right at you!
    ((((YOU )))))

  42. Elizabeth says:

    I have a new mantra: Clean margins, clean margins, clean margins. . . .

    Your strength is incredible. Sending positive thoughts of ‘clean margins’ your way. And crossing my fingers that you’re back to treatment this week.

  43. ggirl says:

    Praying for clean margins.

  44. spacemom says:

    Bummer Bummer Bummer!
    My cousin has this too. She’s having trouble with her arms. I hope this clears up for you too….

  45. maggie says:

    My mother’s had neuropathy too…but not like that, not so she couldn’t use her legs. Glad yours seems to have lifted – here’s hoping it continues in the right direction.

  46. Ally says:

    I need to puruse the newer posts to get an update. This was no doubt hard news to receive.

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