April 2015 Chemo Crew... Starting in April? Please join us!

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  • gkodad
    gkodad Member Posts: 188
    edited October 2015

    Addie, I had neuropathy that included my face, and while it's no longer numb, I still have one cheek that will suddenly go "weird" and feel like something is crawling on it, or that hair is brushing against it (which definitely isn't true). The tops of my toes do that too. So it still might be just the neuropathy thing if you've been struggling with it.

    The face neuropathy is less common but it does happen.

  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited October 2015

    I don't have face neuropathy but I do have a weird hot spot on my left shin...it feels hot. I bet it's the taxol, Addie!

    What a difference a half inch of hair makes: my friend says to me yesterday"you are dangerous now, you turned back into a girl". Lol, my boobs did not grow back, so it must be the hair! And the social experiment continues....

  • DizzParkMom
    DizzParkMom Member Posts: 316
    edited October 2015

    I agree about 'fall'. Being from Arizona, we don't get much 'fall' or trees, much less leaves that change color. They mostly just rot and fall off the branches one day closer to 'winter'. Up here in Northern Illinois, it is simply beautiful. If it weren't for the wind and rain, it would be perfect.

    image

    The building in the front is a church and the building in the background on the left is my hospital, CTCA Zion.

  • DizzParkMom
    DizzParkMom Member Posts: 316
    edited October 2015

    Forgot to mention...apparently, the cure for my unending eye weeping was 9 hours of surgery. They haven't watered since right before surgery...except when I was actually in tears from joy or pain. Not sure, but thought that maybe they put some gel in them during surgery in order to keep them from drying out and the 9 hours was long enough to 'heal' them. Whatever it is, I am just overjoyed not to have that side effect annoying me along with everything else. P.s. these drains suck. ;-)

  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited October 2015

    Renee- so happy to hear about your b9 result! Yay!


  • ksusan
    ksusan Member Posts: 4,505
    edited October 2015

    Hi, April women. So far, so good with wearing sleeves and gauntlets preventively on longer flights. I learned something both amusing and frustrating while looking at the research. You may have read a study finding that sleeves may not make a difference on flights under 4.5 hours. Sounds pleasingly precise, yes? Well, the reason it's 4.5 is not the result of an empirical analysis--it's an Australian study, and 4.5 hous is the time a domestic non-stop across Australia takes.

  • Positive_spirit
    Positive_spirit Member Posts: 218
    edited October 2015

    so sorry for those with side effects and continuing horribleness from chemo and rads! The Livestrong program at the Y has been a wonderful addition to my life, countering a lousy work environment with caring, thoughtful people.

    And autumn continues in the Connecticut River valley

    ...image

  • Addie29
    Addie29 Member Posts: 307
    edited October 2015

    I've had the facial neuropathy since taxol- I haven't had it In a couple days. I don't go back to see MO until Janurary but I can't help feel like I was to request a scan just to put my facing thoughts at ease.

  • DizzParkMom
    DizzParkMom Member Posts: 316
    edited October 2015

    Positive - so glad you are loving the Livestrong program at the Y. I have gone to our local Y since 6/2011 and love the classes. The don't have the Livestrong program though...bummer. Like you, I find that the experiences I have at the Y counter all the stress in the rest of the world. I LOVE that autumn picture. All this real autumn happening before my eyes has me craving fall food. I told dh we will have to start traveling east every year to see autumn. I never realized how much we were missing out on.

    Addie, sorry about your facial tingling. You haven't added anything to your diet since you started taxol have you? I used an energy once that made my face mildly tingle for a few days each time I drank it. Turns out I was mildly allergic to one of the ingredients.

  • Rpayton
    Rpayton Member Posts: 235
    edited October 2015

    Positive LOVE the photo!!!

    Dizzpark glad you are enjoying the fall colors too! It is my fav time of year and the only time Northern IL is very pretty. I so wish it would last much longer. Unfortunately it is shortlived and the days get short and very gray with no sun for days. Seasonal affective disorder sets in fast. Sometimes, I wish we could hibernate like bears and I could sleep the fat off and wake up in the spring fit and energized. Ha-ha

  • Addie29
    Addie29 Member Posts: 307
    edited October 2015

    I haven't added anything new to my diet- it has stopped. Thank god. Honestly I think I have some back problems that need to be addresses and fixed. A chiropractor appointment needs to happen ASAP just need to get the okay from the plastic surgeon. How are you feeling Dizz?

  • KBeee
    KBeee Member Posts: 5,109
    edited October 2015

    Positive, Glad you are enjoying the Y program.

    Addie, maybe keep a log of symptoms. Anything that keeps up, report after a couple weeks.

    Ksusan, glad the sleeves are working.

    Dizz, I hope you are feeling better and better each day.

    I just finished post rads appointment with Lymphedema specialist and am heading upstairs for routine check up with BS. Fun, fun!!!!!!

  • DizzParkMom
    DizzParkMom Member Posts: 316
    edited October 2015

    I am different each day...? Chest is more sore and less numb than it was last week. I get my breast drains removed in about 75 minutes. Can not wait. Abdominal drain is almost less than 30 cc per day, so we plan to wait here rather than fly back and forth from home. I hope we will be home by Halloween. I am in an abdominal binder for extra support. It's awesome for about 2 minutes and then my back aches. After I take it off at night, it is great for another 2 minutes and then my abs ache. I want to fast forward to December!!!!!!

  • GingerChi
    GingerChi Member Posts: 252
    edited October 2015

    Positive, love that gorgeous view! I wish we had the Livestrong program here, so glad you're enjoying it!! Work can be such a 4 letter word sometimes...

    Dizz, sorry about the pain..but getting some of the drains out will help your feelings a bit! Pretty view you have too!!

    Addie, glad the numbness in your face is gone. Hope the chiro helps if its your back!! My hands and feet are giving me fits today, some days are better than others.

    I'd stopped having hot flashes after chemo, now the Arimidex is giving me mega flashes! I go from having a fan on full force to covering up with a throwblanket...it went on all through last night and the same today. Oh what fun!

    Hope everyone has a good week. Is anyone still in rads?

  • ksusan
    ksusan Member Posts: 4,505
    edited October 2015

    Hang in there, Dizz! I hope those drains are out by the time you read this!

  • DizzParkMom
    DizzParkMom Member Posts: 316
    edited October 2015

    Boob drains are gone!!! AND, I stand a great chance of getting rid of the diep site drain before the end of this week. To celebrate, we made a reservation at another hotel (more fun for DS) for the weekend and then we tentatively fly home on Monday. I am way ahead of schedule so far....surgical team is happy with the results so far. All good progress. Follow up is in late November. Next spring, I will need a little fat grafting done to fill in a little of the upper poles, get a little nip/tuck to clean up the aesthetics, and then I get to decide about nipples...surgical or tattoo. I am leaning toward tattoo.

    Medically, I am still technically anemic and apparently only time will help the numbers, but I feel way better than I did 2 weeks ago. I am amazed how fast things are going now compared to slow chemo time. Today is 6 weeks pfc. I would love to celebrate by showing off my hair....but I still don't have any to show off.

  • Addie29
    Addie29 Member Posts: 307
    edited October 2015

    that's all great news Dizz. The hair will come with time. I too will be going in for fat grafting here eventually. There's a lot of imperfections that can be seen with these implants.

  • lovlilynne
    lovlilynne Member Posts: 405
    edited October 2015

    Hi - happy Tuesday! I feel like I haven't been able to catch up in a while. The weekend before last we went to the White Moutains in NH, it was nice to get away. Heather, you should definitely come to NE in the fall for a visit -the only thing is that you cannot predict when you'll see the fall colors. This year they have taken their sweet time, but now that they are out, it's absolutely beautiful! The last couple of days I have been taking it all in and trying to appreciate the "light show" that mother nature is putting on. But, I never would have said "come at the end of October" because usually it's all over/gone by now. They are predicting a windy rain for Thursday, so it will probably wipe what's left out.

    Here is a picture I took on the way home from (my last) rads treatment:

    image

    I know, crappy with the telephone lines in it, but I was taking it from the car. Here's another one (I did not take) from a hill at a near-by town:

    image

    This one was taken almost 2 weeks ago, so you can see that there's still a lot of green - by now it must be even more spectacular, although some trees may already have dropped their leaves.


  • lovlilynne
    lovlilynne Member Posts: 405
    edited October 2015

    Last Wednesday I had my final visit with RO. She gave me a book about surviving cancer - I don't have it near by or I'd give the title, it's written by a local doctor who had breast cancer and was surprised at how little there was about after cancer. She mentioned that I might get depressed or anxious now that treatment is done. We went over my follow up appointments - MO in 2 weeks, mammogram next year - usually around time of diagnosis, but she said she would rather i wait until March or April because she likes to have at least 6 months from end of rads before mammo, and then follow up with her around April. We talked about the fact that there are no tests or scans or anything to know that this worked or not or if I have a reoccurred or spreading - they will only react to symptoms.

    My skin is doing ok - not healing as quickly as led to believe, I seem to be in the "it gets worse before it gets better" camp, and the one area is still raw, peeling, and itchy a lot of the time. It is shrinking slowly.

    At the same time, I'm getting annoyed at the linger side effects of chemo. I still have full neuropathy in my toes and ball of foot. In the morning, my feet are crippled and I can barely walk. Whenever I get up from sitting or lying down for a length of time, I have the same issue, not quite as bad as the morning, but still very sore/stiff/painful. My whole body is also very creaky - just so stiff all the time I constantly feel like I am unfolding myself. I asked my neighbor who is a PT if she thought PT would help, and she reminded me that they offer this "STAR" program - cancer survivorship reehabilitation, so I had MO send over an "order", and I am scheduled for first session next week. According to the flyer, they have specialized "STAR" therapists who will evaluate/assess neurological, balance, musculoskeletal, lymphedema, swallowing, speech/language/cognitive, energy conservation and sell-care management, ADL, and pre-vocational/vocational. I'm just hoping for some specific exercises that I can do that would improve my flexibility and foot pain.

    So, on my first day without rads, I had two other dr. appt. - first the dentist for the first cleaning I've had since before diagnosis. No cavities - no issues, yay! Then on to the urologist for my annual check in for bladder issues, no blood in urine, renew prescription, yay!

    Today is first day without any appointments for me, but have to take DD1 to eye appointment - never a dull moment!

    Lynne

  • DizzParkMom
    DizzParkMom Member Posts: 316
    edited October 2015

    Lynne, those pics are A-Maze-Ing! They look like they are hand drawn...there is now way that nature can really look like that. I will have to post some 'fall' pics of phoenix when I get home. Really, you will understand why I am so excited about seeing Fall this year. Sorry that rads and chemo effects are being annoying. Side effects should get the message and take a hike. I am glad you start PT soon. I know it has to help.

    My neuropathy in my feet is just barely noticeable now, but my hands are so cramped up in the morning, it takes a while to stop dropping everything...since I can't bend over to pick anything up, I am constantly leaving a trail of 'lost things' in my wake. My breast area was completely numb a couple of days ago, but now it is tingling and achy...I hope that's a good sign.





  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited October 2015

    Lynne- what beautiful photos! Such a nice reminder that the world is a beautiful place. Good luck with your new program and steering through "survivorship".


  • lovlilynne
    lovlilynne Member Posts: 405
    edited October 2015

    I decided to document my hair experiment in a separate post. I mentioned that I was going to try a wash-out color. I did try it - it turns out that "Bronze Attitude" turns gray hair pinky/orange. I think most of it was on my scalp. But, it didn't lie about being wash out - most of it was gone after the first shower, and all of it was gone by the second. It gave me courage, though, and today I'm going to try semi-permanent color - that will be better at covering the gray, but it's not a long committment if it it's not quite the right color. I've actually never colored my own hair before - I have always gone to a professional, so I hope it comes out all right. Here are the pictures from the wash out experience - the pictures make it look better than it was.

    image

    image

  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited October 2015

    Lynne- because I love you: please check the link below to browse a list for safe hair color. There are thousands out there, and are ranked in order of safety on this list. You can either peruse the list or do a search on a specific product.

    http://www.ewg.org/skindeep/browse.php?category=ha...


  • bluedog
    bluedog Member Posts: 212
    edited October 2015
    Katy, thank you for that link. I just spent an hour clicking around on the Environmental Working Group website. My mind is reeling. I have definitely had my head in the sand about environmental toxins.
  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited October 2015

    SpecialK told me about that site. I'm glad you found it helpful. I was so excited about the Look Good Kill You program. Oh! I mean LGFB. Anyway, I took the bag of make-up they gave me and looked every product up. Threw most of it away, cried all afternoon and started writing letters. It just so happened I wasn't the only one who felt that way. It turned into this: you might have already seen this. It is on bcaction's FB page

    image

  • AndreaC
    AndreaC Member Posts: 220
    edited October 2015

    Hi all -

    Dizz, I'm so glad you got the boob drains out! Drains are a big pain in the neck. Or boob. Or wherever. Hopefully your belly drain(s) will come out soon.

    Beautiful pics Lynne! DH and I were in New England a couple of years ago in the fall, it was so gorgeous! On the west coast we don't usually get colours that vivid, but this year is an exception because we have had way more sun than usual.

    I have a date for my hysterectomy & oophrectomy - Nov. 19. The surgery itself shouldn't be too bad, only a one night stay in hospital provided there are no complications. It will be another six week recovery but all that means is no heavy lifting/housework. Not a problem, I don't do much of that anyway - haha!

    Your hair looks very funky, Lynne!

    I'm waiting till my hair gets a bit longer before colouring it. I do want to colour it, I look so old compared to DH! I'm curious to see what it looks like without colour though so I'll wait.

    I'm having hip pain - I don't know if it's from chemo or tamoxifen (which I just stopped in preparation for surgery), or if it's a side-effect of my new antidepressant. At any rate, it is quite painful at times - if I'm sitting still it's fine, but getting up or down is often a bit of a struggle. I'll have to see the doc for a preop visit soon and will see what she thinks. My elbows and shoulders hurt sometimes too. Maybe I'm just getting old.

    Andrea



  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited October 2015

    Lynne and Andrea, I'm super stiff and creaky too. If I keep moving I'm fine but if I am still too long I just lock up :/

  • ksusan
    ksusan Member Posts: 4,505
    edited October 2015
  • DizzParkMom
    DizzParkMom Member Posts: 316
    edited October 2015

    I was alerted to take a closer look in the mirror this morning. My hair fairies were busy last night. It truly is sad that I am this excited😄about so little hair!

    image

  • bluedog
    bluedog Member Posts: 212
    edited October 2015
    Katy, yes I saw your fabulous (heartbreaking) ad on another BCO thread. Thank you for your brave activism.

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