Bits n Pieces

I haven’t blogged for a bit. Life is pretty much back to normal. We have had a few household projects, the main one being redoing my office. I should say transforming my former junk room into a workable office space. It was one of these rooms that anything I didn’t know what to do with would get dumped in.  I had one small bookcase groaning under piles of books and more piles in every corner.  This summer when we redid the bathroom we sacrificed the office closet and that left us with some extra wall space, which is now sporting new bookshelves. I spent all weekend sorting, dusting (good Lord where does it all come from?) and re shelving books by author and genre. I made room for some of my sister’s books as well (she got two whole shelves!) and even parted with a small stack of my own (baby steps… I have a hard time letting go of books). Found homes for all the assorted “stuff” and organized my workspace.  I now have a combination library/office and the best part is I actually had the energy to work for two days straight instead of a few hours at a time and then having to recuperate on the couch.  At my last oncology visit I was told the chemo was all out of my system and I’m finally starting to feel like that is true.  Just a little post chemo weirdness though.. my eyebrows fell out again.. not all of them, but they became noticeably thinner and now have returned. My eyelashes completely fell out twice since returning.  I wasn’t aware that could happen but a little googling tells me it’s not that unusual and it will likely happen a few more times.  My fingernails never peeled or got terribly discolored though  that is a pretty common side effect of the chemo I was on. I kept them short and with layers of polish to keep them strong. Now, however, I have white lines in all of them and one thumb nail looks bruised.  All of the nails are peeling but from underneath. As long as I keep them polished they look fine.

I just realized tomorrow is the anniversary of when I discovered the lump that got me into this mess.  Maybe I’ll bake a cake. Or have a drink to celebrate.  Actually I probably should celebrate the fact that I found it.  Or not.  Most likely, not.  My doctors haven’t use the words “cured”,  “cancer free” or “NED” (no evidence of disease). I’m not sure when or if I will ever hear those words before the 5 year mark (countdown started after I finished treatment and began Tamoxifen.. so five years from September, 2012).  I have my first post diagnosis mammogram scheduled for November 12. Maybe I can get a little Ned out of them then.  I am prepared to be told there are changes from last year. I should hope so considering I’ve had surgery and radiation since then. Unfortunately that won’t make it any less scary to hear, I’m afraid.  And if the radiologist utters those words, regardless of what the changes are my doctors are obligated to follow up with more tests and then I get to wait on results again. I’m starting to get that I won’t feel free of this for many, many years, if ever.

I am flying for the first time since surgery this upcoming weekend. In preparation I visited the Lymphadema Clinic and was fitted for a sleeve and glove.  My doctors never said much about the need for this but I requested a referral. I was sent to P.T. where I was told compressing the arm if I’m not already having trouble would cause more harm than good (makes sense). Since I had heard that women who previously had no problems did when flying I asked if I could have a sleeve just to bring along as insurance and promised I wouldn’t wear it unless I needed to.  The physical therapist agreed and set me up with the Clinic.  At the Clinic I was told I HAD to wear the sleeve when flying because once I had problems they wouldn’t go away.  She then proceeded to explain all about lymphadema.  Who needs that!?   I have had no problems at all, but I only had one lymph node removed and I’ve been pretty diligent about exercising the arm and following as many precautions as I can.

 
In other news, I’ve finally narrowed down my tattoo to 3 choices.  As of this weekend it was 4 but I decided against f*ck cancer in a fancy script.  As I’m going to be a grandmother, that would be unseemly.   I know I’m a bit off schedule having insisted I would get one before I turned 50, but I couldn’t commit.   I’ll be in Austin next week. Where better?

These are the 3 top contenders.

The forget me nots in honor of my sister.

This means Survivor (too cliché?)

Care to vote?

Speaking of voting… robocalls are the devil.  We have one registered Republican, two Democrats and an Independent at this address and we all voted early since we will be away on November 6. These calls are driving me batshit crazy!

Just had to get that out.

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27 comments

  1. Facing Cancer Together · October 29, 2012

    What conflicting information about the compression sleeve! I wear one while flying (had all my armpit nodes taken out) despite not having lymphadema, and haven’t had any kind of problem.But who knows what is best? Apparently even the experts disagree. 😉

    Nevertheless, enjoy your flight and your trip! ~Catherine

    Like

    • mainelyhopeful · October 29, 2012

      I think I get better advice from other women, so thank you 🙂

      Like

  2. eddiesandcurrents · October 29, 2012

    I vote for the one with the flowers in your sister’s honor. Pretty seems right for this part of the journey. Traveling mercies, and stay safe during Hurricane Sandy.

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  3. Susan · October 29, 2012

    I like the one for your sister too. It is lovely and a beautiful way to honor her. Good luck flying, hope the sleeve is not necessary. I have lymphedema but my arm is not huge or anything just very slightly bigger than the other one. The Lymph clinic said the same thing to me but nurses where I go for Herceptin have all said it was just a precaution, so who knows what is right.

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    • mainelyhopeful · October 29, 2012

      Kind of like chemo brain.. it’s all anecdotal. I’m thinking better safe than sorry!

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  4. lmw · October 29, 2012

    I had all my lymph nodes removed and am (mostly) good about my exercises. 🙂 My physiotherapist here in the Netherlands was very honest and said that no one has really done any studies on lymphedema during flying they just go on the “best” information. Read: Gut feel. That being said I use a sleeve when I fly…I figure it can’t hurt.

    Have a safe trip!! xx L

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  5. Lori · October 29, 2012

    I’m killer jealous about the office!!!

    As for the lymphedema, I had it and it went away. Got it from a sunburn (NEVER have I had an issue flying), and I DO know how lucky I am and that is CAN happen.

    Enjoy the office, enjoy the trip!
    Lori

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  6. tinajuvonen · October 29, 2012

    I didn’t realise untill recently that you should never get a blood draw from the same arm as you’ve had any nodes removed or sectioned, in some cases this means a vein in the leg is the only option!!! yikes. Thank goodness us bloggers keep eachother imformed. I did not wear, or even think about a sleeve when I flew to uk recently but I did do what I felt to be a real old lady thing and wore compression socks to stop ankles swelling, that worked a treat.
    My vote is for Live, Love, Laugh. It’s such a beautiful script and good god we all need to do all three of these. I say why just get one tatoo. All the best Tina J of My boobie trap

    Like

    • mainelyhopeful · October 29, 2012

      I did know about the blood draws and also not having BP checked in that arm. Prior to my surgery no one has attempted either. Maybe I offer my left arm reflexively but I’ve always had BP and blood draws on the left. Since surgery every time I need blood or BP somewhere other than the cancer center they go for my surgical arm. Go figure!

      Like

  7. hopeforheather · October 29, 2012

    I vote for the Forget Me Nots as well. 🙂

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  8. rachaelsladylumps · October 29, 2012

    I LOVE the forget me nots in honor of your sister! It is beautiful and has special meaning. Laughed my butt off at #4 though. 🙂 And I can’t believe you have lost your lashes and eyebrows more than once. Crap! Mine are just starting to grow back in. Have a great trip and I hope you don’t get lymphedema. I have it in one arm and it is a pain in the ass….I am slowly getting rid of it though. The sleeve helps a ton.

    Like

    • mainelyhopeful · October 29, 2012

      That surprised me too. I’m not going to get attached to the lashes this time around! Hope you can get rid of the lymphadema for good.

      Like

  9. miltonia10 · October 29, 2012

    I vote for the forget-me-nots, too. They look peaceful and calming.

    Like

  10. lightscanceraction · October 29, 2012

    I vote for the flowers also. It’s beautiful and I like the comments above that suggested it honor your system. I enjoyed catching back up with you and have been wondering how you’ve been, post-chemo. Glad to hear that you are getting back to some level of normalcy. I can’t wait!

    Like

  11. valerianfields · October 30, 2012

    How did they know the chemo is out of your system? Blood draw or is there a time limit where it’s still there? This I’ve wondered about.

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    • mainelyhopeful · October 30, 2012

      I think a combination of the two. My doctor told me it was out of my system after looking at labs but we had also been discussing how I feel.

      Like

  12. breastcancerat40 · October 31, 2012

    Tattoo! What a great idea!! I like the last one 🙂

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  13. The Presents of Presence · November 12, 2012

    I always wear compression sleeves when I fly ~ I have for 10 years. They are simple and better to be safe than sorry. So glad you went with the forget me nots…beautiful. xo

    Like

    • mainelyhopeful · November 13, 2012

      Definitely better safe than sorry. It really wasn’t bad at all and I had no issues.

      Like

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