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

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  • Karen30
    Karen30 Member Posts: 135
    edited April 2015

    I was given this beautiful quilt today - if you look closely you will see lots of blue threads each one represents a prayer someone has said for me - the idea is that I can wrap myself in prayers for each treatment etc- I was so touched and will keep it with me as I continue this journey .image

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  • Beachbum1023
    Beachbum1023 Member Posts: 1,417
    edited April 2015

    Karen, your lovely gift is beautiful. I hope it brings you comfort, support, and serenity. How thoughtful.

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  • slv58
    slv58 Member Posts: 1,216
    edited April 2015

    Karen that is so beautiful! What a thoughtful gift, you are surrounded by love!

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  • Fran2014
    Fran2014 Member Posts: 140
    edited April 2015

    Good morning all- sending out some real positive thoughts for those of you who received your "chemo cocktails" this week and are experiencing some real crappy (pun intended!) SE's. Big hugs to those of you who are in or were in the hospital. Hang tough ladies! Last weekend, I could barely get enough energy to get off my couch and go to the bathroom and a week later I'm up and about and headed out to watch my daughter's first lacrosse game of the season. I know those couple of "really bad days" when it all hits you at once can feel endless!!! Please try to stay strong-it does ease up!

    I also want to send out a huge shout out of "THANKS" to so many of you. In the few short weeks that I have been on board, so many of you have truly inspired me and helped me get in a "better place". Whether it's through your questions, dialogue, or just validation of how the "process" and SE's really do stink, I have felt like I'm part of a group who really "gets it". On that note, I actually left my house yesterday to walk my dog in nothing but a lightweight baseball cap (without any hesitation). It was obvious that I had no hair and normally, I spend so much ridiculous time thinking about who I'll see, what they will say, etc., etc. Yesterday I just walked (albeit much slower than usual) and enjoyed chatting with a few neighbors within the development. Some had known about my re-occurrence, others had not, but I just "chatted" and enjoyed the friendly conversations & didn't worry about my appearance & how others would react. While this doesn't seem like such a big deal to some, I know others will smile a bit. Taking it one day at time-that's my new philosophy! Thanks again ladies-you're the best :)

    Fran

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  • Fran2014
    Fran2014 Member Posts: 140
    edited April 2015

    Oh by the way, I had my first post-surgery "fill" into my expanders yesterday. Kind of funny thinking that they are "pumping up" my boobs! FYI-didn't hurt at all-Just a bit sore today.

    Fran

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  • slv58
    slv58 Member Posts: 1,216
    edited April 2015

    Fran what a beautiful post. The support and understanding that we share cannot be found anywhere else. I've been on these boards over 2 years and don't know how I would manage without. We all understand. This is a safe place where we don't have to worry about protecting those close to us with the sometimes scary, emotional realities.

    Good for you going commando! It is liberating isn't it? I'll never forget the day I decided to not wear my wig. I was going through radiation (during the hot summer) and decided going topless (lol) to the hospital felt like a safe first outing. So there I am walking down a very long hallway towards radiation, feeling a little self conscious and a woman walking towards me slows and says "you look beautiful" you cannot imagine how much I appreciated that act of kindness. I felt confident after that and never wore my wig again! I'm still looking for the right opportunity to 'pay it forward'

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  • gingeel
    gingeel Member Posts: 102
    edited April 2015

    Stephmoen, Hi! I was injected with a radioactive isotope and given a sugar drink. The isotope remains in your body for 24 hrs. Did you get an injection? If so, they told me to stay away from infants, pregnant women and my 4 and 7 yr old......

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  • Karen30
    Karen30 Member Posts: 135
    edited April 2015

    Gingee - good to know my PET scan is next week and I have a colleague who is pregnant so I will be sure to keep my distance !

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  • gingeel
    gingeel Member Posts: 102
    edited April 2015

    Hey everyone, haven't had a chance to read through posts from yesterday, but I got my power port yesterday, and that little bugger hurt like hell! The procedure went well, but I felt like crap all day yesterday, and from where it's been placed (up right next to my clavacle), it hurts to swallow, talk loudly, etc. I guess I'm straining those muscles or tendons or whatever sits there. They only told me to take tylenol, which, seems to have worked better than the Oxycodene I had left over from my Lumpectomy. I had a killer migraine last night which didn't help my case, but finally feeling physically "better". Mentally? Not so much. Have been extremely irritable and weepy today. Making myself sit outside cause it's a beautiful 72 degrees in New York. Gonna have to read through your posts.....xoxo

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  • Karen30
    Karen30 Member Posts: 135
    edited April 2015

    be sure to ice your neck and port site- mine was the same hurt like heck the first 2 days- a week out its much better- I think part of it must be the position your neck is in for the procedure - feel better !!

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

    Karen, congrats on the 1st AC being in your rear view mirror! Love the quilt!

    Ginger, Hope the port feels better.

    Fran, I felt the same way this week when I just wore my ball cap. I felt like I could have written your post; I feel the same way. You have a much better way with words!

    Thank you to the person who suggested the buffs. I found some today and could not have imagined how comfortable they'd be! So very cool and soft! I will be splurging on more. I have a skinny head, so these fit even better than hats. I am always so grateful for the practical information gathered here


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  • Karen30
    Karen30 Member Posts: 135
    edited April 2015

    KBee where did u find the buffs ? Not sure I want to venue to the mall this weekend

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  • Stephmoen
    Stephmoen Member Posts: 563
    edited April 2015

    interesting I did get the injection and nobody told me to stay away from my 1 and 5 year old!

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  • GingerChi
    GingerChi Member Posts: 252
    edited April 2015

    karen30, I LOVE your quilt! It's such a great reminder that you're taking all those prayers with you through this journey...that's wonderful! :)

    gingeel, I had some of the same after my port placement, I haven't had a migraine for years but did after that! I also got dizzy easily. To cough or swallow hurt my neck and back of my throat for days. But it was all worth it on my infusion day, accessing it was easy and totally pain free. I've gotten to be a big wimp when it comes to needles, so I was thrilled. Hope you enjoyed being outside and are feeling better soon!

    Fran, your post was so very nice! Glad you're feeling better....hope you enjoyed your daughter's game!

    Allison, glad you're back home and feeling better!!

    So Monday was my first infusion and today I feel sooooooo much better! I'm not achy today and my appetite is back with a vengeance! The fatigue is heaps better too. Thank the Lord! :)



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

    Karen, I found one at Scheels. I am going to order more at Buffusa.com ...looks like they have a great selection. I have not taken it off me head since putting it on....soooooo comfortable! Appropriate sine I am a Survivor fan...and appropriate for us since we are all Survivors kicking cancer's ass!!!!!!

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  • Rpayton
    Rpayton Member Posts: 235
    edited April 2015


    Got through chemo treatment #1.  Told myself it was a spa day. Relaxed in a chair, beautiful view of the pond and swans.  No adverse side affects during treatment. Today had a Nulasta injection to boost white blood cells. So far so good....Had the energy to clean my house today and do some laundry.  Hope all of you are doing well. Many prayers...

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  • lovlilynne
    lovlilynne Member Posts: 405
    edited April 2015

    I was injected with radioactive isotope for the sentinel node biopsy, and all they told me was to stay away from airport security or government buildings as I might set off the alarms :-)

    Gingee, I second the advice to use the ice - they gave me those awesome waterproof, refillable ice bags, and it had ties to I tied it around my my neck so it would hit my site. Day 3 out today, and it generally I don't notice it, but then I end up reaching or picking something up, and I feel like the site is straining against the sutures.

    I think Fran said that her friend found the Buff at Dick's Sporting Goods. I am glad to hear that they are so comfortable, i will check it out. DH, who is had a major BASS fishing habit, will be happy to have an excuse to go to Dick's (even though he almost never buys anything there). KB, it looks like it's just a tube of fabric, is that right? But, it doesn't show the bald head? I couldn't figure out exactly how you wear it since the pictures showed it as a scarf or a headband.

    Day one of our weekend "staycation" almost done. I took the girls to Target, lunch, and Orange Leaf, then Tess has had a friend come over for a sleep over, and I have Dunkin' munchkins for the morning. I cleaned out all the winter trash from my Jeep, but it still needs cleaning and vacuuming. I may splurge on a detailing.

    I'm going to go pick up my prescriptions and subs for dinner. Probably some popcorn and a movie later. Have a good night everyone!

    Lynne

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  • lovlilynne
    lovlilynne Member Posts: 405
    edited April 2015

    Ugh, forgot I wanted to comment on Allison, thanks for the tip on the hydrating. It seems to be a very common theme. I am concerned about it, because the more I drink, the more I pee. My body seems to work very hard at getting rid of any excess fluid.

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

    There are full Buffs and half Buffs. The half Buffs are a neckband or headband. The fulls can be tied off at the top or twisted in various ways. REI has them, including some with high UV protection.

    My port went in 3 weeks ago and is still uncomfortable at best and painful at worst, but worth it to make chemo and draws easier, since I had a bilateral.

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

    As far as Buffs go...they are awesome! I'm wishing I'd saved some tendrils of hair in front of my ears when I did my war shave...then until they fell out it would totally just look like I had hair tucked in the Buff! Grrrrr....hindsight...maybe someone else who is feeling punk rock and still has hair can try it and see if it really looks like I think it would...😉

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  • GingerChi
    GingerChi Member Posts: 252
    edited April 2015

    Rpayton, Glad to hear you're doing so well, thats great! :)

    I found lots of Buffs on Amazon, prices vary based on the pattern, many of them are free shipping. :)

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  • Karen30
    Karen30 Member Posts: 135
    edited April 2015

    So which buffs are the best the half or full

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

    I have the full buffs. There are a whole bunch of ways to wear them, and once hair returns, the can be used as headbands. The are basically just a tube of fabric, but comfortable and breathable. I have a tiny head, so it is nice to have something that does not stick way out around my ears.

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  • sheshe3
    sheshe3 Member Posts: 70
    edited April 2015

    Here is a link to a very short video for any interested, that tells lots of ways to wear a buff. http://www.buffwear.com/ways-to-wear


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  • lovlilynne
    lovlilynne Member Posts: 405
    edited April 2015

    I have a port question for you if you have a chance to respond - I'm just curious. My direction said I could not shower for 48 hours after port placement, then it says I cannot get it wet for 7 days. The nurse told me to cover it with plastic wrap and stand with my back to the shower, which is what I did today. But, the neck gauze ended up getting wet, and the plastic cover over it wouln't adhere anymore, so I took that off, and now it's just the steri strips showing.

    Under the plastic covering, the site is getting really itchy and driving me crazy. I looked at the pamphlet that I got from the cancer center, and it says on Day 3 after the procedure that I should take the dressing off, that I can shower, and that I should leave the incision open to air (and this is closer to what I did with my breast surgery also.)

    So, I'm curious what directions you all go/followed. I keep thinking that they are going to have to take off the dressing by Tuesday anyway to access the port (and so, will they put another dressing back on over after??).

    I also have another place on my neck (above where they make the incision), that is all red - looks like two bug bites and a scratch in between them, and it's very itchy too. I'm wondering if I was mildly allergic to something that they used on me. The site over my neck incision looks like it could have been where they shot me with the lydocain?

    -Lynne

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

    Lynne, when I got my port they said just don't shower for 48 hrs, or I suppose keep it dry. It never had any dressing on it or stitches, just surgical glue which is still on both the port site and the little incision above it...I think that's where they thread the catheter into the vein. For me both spots feel like giant spider bites, first painful and now 10 days later just occasionally itchy. I also had my port accessed for my first chemo the same day it was installed, and again the day after. Still no dress g used, just a bandaid over the needle pokes. Sounds like there are a variety of protocols where this is concerned....

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  • GingerChi
    GingerChi Member Posts: 252
    edited April 2015

    My instructions were to keep dry for 48 hrs, then remove dressing and leave steri strips in place until they curled up. I could shower after 48 hrs. Once I removed the dressing, I had several red areas due to the tape they used, but that's not unusual for me. Wednesday will be 2 weeks and the steri strips still arent turning loose tho! At first they itched but not so much anymore.

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  • Karen30
    Karen30 Member Posts: 135
    edited April 2015

    hello Lynne- you can shower with the plastic dressing in place and when it comes off, the plastic(tegaderm) dressing should come off on day 2 or 3(surgeon dependent) if it's causing a skin irritation take it off. The steri strips say on until they fall off on there own usually around day 10-15 - it's fine for it to get wet but don't soak the area- just pat dry and leave open with steri strips in place . The neck site is usually sealed with dermabond which is a glue which forms a scab and will just peal off on its own like a scab- that is fine to get wet same day.

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  • Karen30
    Karen30 Member Posts: 135
    edited April 2015

    By the way when they access the port they will access it without touching the steri strips that's what they did with mine . Mine was super itchy as well but that's usually a sign of healing and it's settled now I'm day 10 post port placement.

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  • Karen30
    Karen30 Member Posts: 135
    edited April 2015

    she she which is best the half or full- thanks for the link now it makes perfect sense - I'm thinking the full so you can make the twist and have a hat but I just wondered what your experience was

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