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Anyone starting chemo August 2016?

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  • Jiffrig
    Jiffrig Member Posts: 158
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    My second infusion was today and went very wel! 1/4 of the way finished. Yeah! 3 patients rang the bell today being their last chemo. So wonderful to see the light at the end of the tunnel. Cold capping going very well. I am lucky to have four A/C infusions an d 4 adult children to take a turn help my husband change caps. I figure they owe me! 😉😉. No hair loss on my head, but pulling whiskers out of my chin with my fingers (I guess that's a win).

    Hope, if you can just get a little nap, from all the stuff they give you, you will feel great to go to their game. It's a shame they can't have their games at 2AM, that's when you will be wide awake from steroids!

    Unwilling, you are amazing! Stick to your guns. Probably you will end up dying of old age many years from now. No mention of cancer! Keep strong!

    Pinkjellyroll, keep us posted. My onco said family support is the number one indicator of good outcomes!

    Hang in there everyone, have to go take Allegra for neulasta shot tomorrow and who knows what else..

  • Hopefloatsinyyc
    Hopefloatsinyyc Member Posts: 97
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    jiff- I declined the steroids- opted to fight the SEs without... Thankfully with the support of my MO.None in my protocol at all, so none of those sleepless nights for me!

  • fireheart438
    fireheart438 Member Posts: 85
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    Haven't been around much this week. All my energy has been spent with a very busy time at work and making sure I get plenty of rest. Taxol/Herceptin #2 this morning. My bags are packed and all I need is some coffee and my shower.


    Unwilling - Envisioning walking in to the infusion center wrapped as a plastic mummy and numb from the neck down. Oh, how you made me laugh. My hubby looked at me quizzically when I very literally laughed out loud reading that part of your 8/14 post. When he asked what I was laughing at I told him, "breast cancer." I really cherish how we can all rally together and both laugh and cry about our issues. Don't know what I'd do without all you ladies. I see you have made some tough decisions about treatment. I am so sorry you have had to struggle with that but glad you have chosen a path that you feel peace about. Will be keeping you in prayer. Wishing you a 50th anniversary that is more wonderful that you could ever imagine.


    Kenzielulu - Good thought to sleep propped up. I've been battling seasonal sinus issues as well. Will have to keep that in mind.
    Embrace being 49 and bald, Kenzielulu. Yesterday I decided that a 52 year old can rock a mohawk. My stylist offered to come to the house, but I decided that BC was NOT going to make me whither away in my home afraid of what I look like or what others think. So I went to the salon and actually had a great time with the ladies there offering their opinion as we did the cut in phases. Some man did come in for a haircut and I think he felt uncomfortable as we all talked openly. In spite of the fact that I thought I'd have an emotional breakdown losing my hair, this was okay. A way for me to take control of the situation that I've got no control over. I admit that I worried that I'd look in the mirror and feel like an idiot, so I took a doo rag along. When I left, though, I walked out with my head held high (and my hair peaked higher). Let anyone ask and they would hear the truth. Let anyone laugh and I'd offer to show my BMX scars. Sometimes you just have to be a badass.


    Came home to this huge, heavy box on my dining room table. A dear friend who is struggling with her own issues and doesn't have the money for it sent me this AMAZING box of goodies. A few snacks, but mostly other things to occupy my mind and make the process easier. Every last item was so well thought out and totally practical for a chemo patient. The best part were the things she made - a beanie in cat fabric, a bright and cheery head wrap, a soft cushion to cover the seatbelt and protect my port, and a "grouchy day" bag I can use to carry items to infusion. I felt so humbled and loved that I just broke down in tears. It's one thing for people to be nice, but when someone who has not been in your shoes really GETS IT and shows it…it totally blows me away.


    Welcome Mydogspot! Just want to encourage you to get a second opinion if you're unsure about what your MO is recommending. Trying to research it on your own is mind boggling. It can never hurt to get a different professional perspective.


    Falabella - We're glad to have you with on this thread no matter when you start your infusions. Please keep posting. We're like family now. Sending hugs and praying your infection resolves sooner than later.


    Hopefloats - My port was sheer hell for about 7-10 days. I wanted to rip it right out so many times. But it's now been 2 weeks and I hardly notice it's there. Hang in there…it does get better.


    Pinkjellyrollz - Welcome to the sisterhood! I love that analogy. I, too, love learning from all the ladies here.


    Okay…I still haven't caught up on all your posts. But if I don't shower they may hose me down at the infusion center. Will catch up while I'm spacing out on my Benadryl. LOVE YOU ALL!

  • darab
    darab Member Posts: 894
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    Good luck Hope, we'll all be thinking of you today. Hope you can make it to your son's game.

  • caligirl55
    caligirl55 Member Posts: 407
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    My3rosebuds I just read your questions ... I'm so new I am not much help. My head is tingly but no hair loss 10 days after first chemo ... I am antisipating it kind of like my chemotherapy I was so anxious for it I was happy when it was over.... Now I'm a pro ... My oncologist said try to stay out of the direct sun for long ... So far I really haven't felt like sunbathing so that's good.

    I took Claritin but I keep reading other stuff too. I have had some bad days but I'm having some good ones now ... I'll take it one day at a time.

    I've beenpraying for our girls having infusions today ... Hope everyone fairs well.

    Happy Friday y'all 😘



  • darab
    darab Member Posts: 894
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    My3rosebuds, I looked for your post to respond along with Cali but can't find it. I assume you're asking about hair loss. I'm 11 days out and the top of my scalp is pretty sensitive. I was doing great until yesterday when I ran my fingers through my hair and found them all intertwined with hair. I guess it beginning. The "shedding" continues today. I've been told to expect the worst around days 15-18. It's also been recommended when you know it's time, go ahead and buzz it so you feel that you're in control instead of the cancer. I'm sure that's not for everyone though. It's important to feel ok with yourself and all your decisions. Only YOU know what's right for you.

    Caligirl, I took Claritin also for the Neulasta, but I think next tie I'm going to switch to Allegra. I did experience quite a bit of deep bone pain for a couple of days after the injection. My MO said that basically whatever SEs we experience the first time, the only one that may get worse is the fatigue. Between presription mouthwashes, full body bio-mat, and pain killers. 2nd round chemo here I come!

  • AnnieTater
    AnnieTater Member Posts: 57
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    Hi everyone!

    I have been feeling pretty good the last couple of days - maybe because I have been super busy at work! I have had some stomach cramping and the runs in the last couple of evenings. But I still consider myself pretty lucky with SE's.

    Welcome Sherri! It is good to meet you under not so good circumstances :)

    Pinkjellyrolls - your snapchat pic cracked me up! My infusion room doesn't feel quite so spa-like. But it is fine and everyone is very nice.

    Fireheart - what an amazing friend! I have a friend, acutally my husband's friend from highschool, who comes by once a week or so for dinner. He looked up what to bring to chemo and brought over a "chemo bag" filled with comfy socks, a tervis, fun magazines, etc. So incredible sweet, but I can't gush too much because he is kind of a "tough" guy.

    I'm thinking about you all getting infusions today and hope you all have a relaxing weekend.

    Annie

  • Hopefloatsinyyc
    Hopefloatsinyyc Member Posts: 97
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    home from infusion.... I feel good so far. It went perfectly smoothly.No nausea, though they said that will likely happen at about 6 hrs post flush. I'm emotional... But that too will pass... The house is quiet and laying down may be a good thing.

  • SweetRain52
    SweetRain52 Member Posts: 19
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    Yes, I am starting on August 25. I'm terrified, but I'm hoping this website will help with that. I have good veins, but maybe I should request a port or is that up to the nurse or doctor??? It just seem to boggle my mind that so many women are getting breast cancer. Sometimes I think that if had been men that were getting cancer like us, they would have already found a cure. Yes, that's frustration talking. My cancer was the size of a thin crayon box, yet they said I was lucky to have discovered it. No cancer in my family, a lot of diabetes and heart disease, but no cancer. Go figure. I just felt a thickening in my left breast and some unusual sensations. It involved one lymph node, so I guess I'm stage 3. Geez, it is so hard not to be depressed. Oh, just colored my hair. I'm 64 and I'm not going to get any reconstruction. May I ask if anyone here has acrylic nails? My surgeon said that I should stop going to the salon as he pointed out the possibility of infection. You know there are so few things that make me feel like I'm pretty and that was one of them. It breaks my heart to stop. God bless you all for your comments, it has really helped me.

  • SweetRain52
    SweetRain52 Member Posts: 19
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    God bless you. I hope it goes easy for you!

  • ajbclan
    ajbclan Member Posts: 396
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    Just got back from my chemo "teaching" appointment, and was thankful to have read some of your posts so I was able to ask questions! I start on the 24th, chopped my long hair short last night....now I just need to get all those prescriptions filled and deal with what's coming. I only cried once today, when I scheduled the 3rd treatment right before my daughter's first "real" concert I'm suppose to take her to (Sia). Fingers crossed I'm side affect free (lol), but already have a mom back up so she and her friend will go no matter what. Thanks for the welcome and the support here....

  • moderators
    moderators Posts: 8,229
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    Welcome to you SweetRain! We look forward to hearing from you and will be sending warm thoughts to you as next week approaches and your first chemotherapy begins. Keep us posted. The MOds

  • karey59
    karey59 Member Posts: 49
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    hi everone! There are so many people here now it's hard to keep everyone's names straight. Are there any Her+ in the group? Im having trouble finding anyone. I hope I'm not the only one, its starting to freak me out. Day 15 is when my hair really started falling out too. Went for herceptin infusion today and will be going weekly for 1 year.


  • Jiffrig
    Jiffrig Member Posts: 158
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    Had my second A/C yesterday. It was a breeze. Chewed on ice before, during and after the chemo push only. No mouth problems like last time. Took one nausea pill before bed, didn't need it but just in case. No problems today so going to stop and hopefully avoid constipation I had last time. Just a little more tired this time. But I am 67 so I can sleep whenever! 😉😉 hope you all sail through your infusions! It seems being prepared through all the good advice found here is the key? We CAN do this together

  • fireheart438
    fireheart438 Member Posts: 85
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    image

    My private duty nurse guarding my snack bag. Nurse Shortie (who looks very smart with her lop ears and bunny slippers) was made for me at Build a Bear by 5 friends who also have house rabbits. They put 5 hearts inside her to represent their good wishes and love. I have taken her to both my infusions so far as a reminder that I am not alone.

    The "My Grouchy Day Bag" arrived yesterday and it seems quite appropriate for carrying my infusion day snacks. It has a photoshopped pic of my grouch bunny along with the grouchy bun of the dear friend who sewed it. We always imagined that if our bunnies could meet they would be best friends because they both have curmudgeon tendencies.

    Here's a pic of me at my treatment today sporting my new "Screw you, cancer" hairstyle and my awesomely warm and comfortable Ron Wear. So glad I spent the money on that outfit. It's perfect.

    image

    I had written a longer post responding to so many of you, but am using an iPad and I lost it. Devil Will have to get on the computer and rewrite. Never a dull moment, is there?
  • MFalabella
    MFalabella Member Posts: 105
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    Hey everyone! Thanks for the lovely well wishes and PM's. Infection is all GONE! Yay (happy dance) Now just dealing with TONS of delayed doctor appointments. I still havent had my heart test or my port placement and I start chemo in two weeks from today. I am hoping it doesnt cause another delay in chemo. I have my bestie driving to Albuquerque from Colorado Springs and my hubby took off work to be there with me my first infusion. Ugg! Oh well, all in God's timing I guess, (as my mother would say if she could) Keep in touch and I hope you are all doing well with the newest "normal".


    xoxoMichelle

  • fireheart438
    fireheart438 Member Posts: 85
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    Michelle - So, so, so happy to hear the good news that your infection is resolved. Now you can move forward. Yay!

    Karey59 - I am also HER2+. That was the only thing about my pathology that really hit me. But knowledge is power, and I feel grateful that doing the chemo was such a clear choice for me.

    Jiffrig - Glad to hear your infusion went well. Will continue to pray that your SEs are easily managed.

    ajbclan - I have cried very little about the diagnosis itself, but TONS about how the treatment has become the center of my life. Some days I felt like the only thing on the calendar were appointments and scarf shopping. Ugh! That's where going back to work has helped me. It's given me purpose and something to focus on.

    SweetRain - All the advice I've read and heard is that acrylic nails are out. I know it's not the same, but maybe you could still treat yourself to manicures and/or pedicures? I don't know what your chemo meds are, but for those of us on Taxol, we stand a high chance of brittle and darkening nails that may even fall off. I read on one of the boards that some ladies use dark nail polish to mask that SE. Since my hair is going to fall out, I think I am going to use the money I would have spent on cuts and color to do regular mani/pedis.

    HopeFloats - Thinking of you. Would love to hear anything you have to share about how you're doing with the silicone implants. I've got my TEs and haven't done expansion yet. Even though the PS was ready to do the first one last week, I wanted to find out how I'd handle the chemo and also keep an eye on an area where I'd had some necrotic tissue. He may be the expert, but it's my body. If my SEs remain manageable this week, I think I will schedule my first one sooner than later.

    AnnieTater - Work does take out minds off what's going on. I tend to be very active and independent. It's a learning experience to figure out how to do enough to be active but not so much that I over do it. My coworkers nagged me all week about that. Heard myself saying, "yes mom" a lot to them. Cool that your hubby's friend was so thoughtful. His secret is safe with all of us.

    Cali - Thanks for the prayers. They are always much appreciated. Looks like you're on a Monday regimen with Dara. Will be praying for you both that day.


    It would be kind of cool to keep a calendar of what day of the week everyone has treatments. Then we'd be able to check up on each other. I could look though this thread and put something like that together. Would that be something you ladies would be interested in? I don't want to offend or share for others. But someone just posted about how this group has grown and it's hard to keep track. I know something would help me. I feel like you are all my sisters. I'm open to all your thoughts.

    Sending love to all!

  • darab
    darab Member Posts: 894
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    Sweetrain, welcome, but sorry we have to meet here! I chose to at least try the infusion without a port. My MO recommended trying as it means one less thing going into my body. I panicked a little before and even called up and asked about having a port put in anyway. I'm glad I didn't have one. There was no problem getting the IV in, there was no pain, burning, or issue with the infusion. I figured I could always go back and request the port if it was too difficult.

    MFabella, so glad you're sticking with us. I think it's just important to have a group that can support no matter what the start date.

    Fireheart, you look awesome! I've been trying to figure out what to to do and when to do it. My hair is coming out pretty good now. I thought it wouldn't start until next week (day 14 is Monday), but yesterday I started noticing it and if I even run my fingers through my hair, the fingers are a total mess with hair. I'm hoping to get through Monday and then will probably go in and have it cut off.

    Karey, hang in; your'e not the only one. I find I read through the posts and then have to go back and remember who said what. Maybe I'll just blame it all on "chemo brain."

    Ajb, welcome, and you may find that the SEs aren't as bad as we imagine. I met two former colleagues for lunch today and they kept going on about how good I look. I think we all have a stereotype about how really bad people look on chemo. They've made such strides in contacting SEs and in many cases, the fatigue is the worst part of it all.

    I did get the SE of mouth sores and issues, so recommend everyone, even those without the port, suck on ice chips during infusion. The mouth issues are pretty miserable, and the "magic mouthwash" is the worst tasting stuff I've ever tasted. I'm sure it will be worth it though if I react again.

    Hi to everyone else, we are getting large in number, but I love that there are just that many more to offer support and compare our experiences. I went to the movies today and saw Pete's Dragon with two of my young grandsons. Such a cute movie if you have little ones or grandkids.

  • WenchLori
    WenchLori Member Posts: 1,027
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    Fireheart, that is a great idea! I already made a list of everyone that I can PM to you later today, if you'd like? That will save you some search time.

    I smell breakfast cooking so I'll be back to take notes on everyone and give a run down of my 2nd infusion.

    Love to All!

    BBL

  • darab
    darab Member Posts: 894
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    Lori, I'm not seeing Firehearts suggestion, but it sounds like you've made a list of those on the thread. I would love you to PM me that list also if you don't mind. I was going to do that myself today.

    Oh, and one other "fashion" question... I'm looking for some simple solid colored square silk scarves, kind of the old fashioned ones. I find lots of huge be woven, cotton, printed scarves, but not the old silky soft ones. Anyone find a good place for those? I kept waking up last night thinking there was a bug on my face... nope just loose hairs. (sigh)

  • Hopefloatsinyyc
    Hopefloatsinyyc Member Posts: 97
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    I'm still managing "the morning after", had a tiny bit of nausea around 3am and took a Metonia and fell back asleep. Slept most of yesterday... Didn't feel much like doing anything. I finally forced myself to eat- had some McDonald's but it tasted like a metal after taste. Trying to keep my mouth clear with rinses and lots of fluids, but I definitely feel "thick" in there!

    All in all I feel ok! Headache is my biggest issue at this point.

  • darab
    darab Member Posts: 894
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    Hope, try rinsing and gargling with baking soda and warm water up to 8 times a day. The thick yuck feeling can be thrush from the chemo cutting down the good bacteria in your mouth. They do make a prescription rinse, but I really think the baking soda works best. The baking soda can also work if you wind up with cankersores which is the chemo side effect.

  • Sherri_T
    Sherri_T Member Posts: 2
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    Hi all just stopping in to see how everyone is doing. Hope I can relate to that thick feeling and no amount of water clears it up. Dara thanks for the baking soda rinse tip. I survived the first infusion and felt good until a couple hours after words then felt 'off' Had terrible acid reflux and didn't get much sleep so hope I can nap today. They had some trouble accessing my veins for the infusion so I am going to have a PICC line installed. I asked about a port but my MO didn't feel it is necessary. Oh I will be doing AC-T. Enjoy your day ladies

  • Hopefloatsinyyc
    Hopefloatsinyyc Member Posts: 97
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    Sherri, glad your doc offered the PICC line but surprised he didn't support a port placement as AC can be hard on the veins, and from what I understand, ports have less chance of infection than PICC lines. Glad that you can save yourself from IVs though!

    I have prepped 8 Dixie cups in my bathroom for washes... 4 have dry baking soda, and 4 have a great mouth rinse that you can get here in Canada that comes in a packet and you simply add water right before rinsing... I figure I'd prep them every am, and it will remind me to do this constantly over the first few days.

    For any Canadians here whom are interested, it's a Shoppers brand (life) and is called oral wound cleanser and comes in a small box with 20 sachets. I have used it in the past with a tooth ache or a canker sore and they clear up right away.

  • ajbclan
    ajbclan Member Posts: 396
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    Ok I'm going to ask a dumb question (well...it may be the first of many!)- what is SE?

    It's really helpful to read everyone's tips. I'm doing things "backwards", I was diagnosed just almost 2 weeks ago, chemo is FIRST, 6 treatments, then I'll do a double mastectomy. Will be meeting with a radiation oncologist in Sept to see if I need that after surgery. Found out yesterday that we are waiting on the insurance for the pharmacy side on the Nuelesta approval- so hope that doesn't delay the start of this all. The oncologist didn't think I needed a port, Nurse Practioner assumed i was getting one, so will hydrate a ton and see what happens after the first round, and go from there. Thanks for all of the hints and posts!!

  • darab
    darab Member Posts: 894
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    ajbclan, SE means side effects. I got confused at first also with all the abbreviations. The moderators have a whole list on the home screen to explain the definitions. It took me a while to realize DH was someones name but meant dear husband! Hydration is the absolute key! Of course I was really happy there was a restroom right next to my infusion room! Good luck. Let us know how you're doing.

  • karey59
    karey59 Member Posts: 49
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    hi se means side effects, as in reactions to treatments. They use alot of abbreviations on these boards. There is a place to go where they list them i think, but i'm not sure where. Maybe somebody knows and can tell us!

  • Hopefloatsinyyc
    Hopefloatsinyyc Member Posts: 97
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    https://community.breastcancer.org/forum/131/topic...

    This is the link to all the abbreviations here!



  • WenchLori
    WenchLori Member Posts: 1,027
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    Good afternoon, I hope everyone that had recent infusions are not having any really bad SEs!

    Infusion #2 was a breeze, the only problem I had was with the pickle juice. It burned my tongue pretty badly due to the vinegar. Luckily I had some life savers with me and that did the trick. No nasusa or dizziness this time around. Thank the Lord!

    I was so pumped up on the steroids my DH took me to lunch, then to a movie. We then stopped and got the last few things I'd need for the next 3 days then home. Once I got home I tried to sit and relax, not going to happen! I swept floors, did 2 loads of laundry then we watched a movie. It was midnight by the time I went to bed. I was out before my head hit the pillows! I told my hubby this morning when I woke up at 11am that "I finally slept like the dead!" his response was "I thought you were trying to avoid the dying thing?" I said "A few hours of it is okay with me"!

    My MO schedules my appointments with him on my chemo days. My DH got to meet him and they had a question and answer session which helped my hubby understand my DX and treatment plan. Very, very helpful. My MO asked to see inside my mouth, I think he thought I was lying about not having any mouth issues. My mouth was cleared, but he told me by looking at my tongue that I was having problems with my taste buds. He asked if certain dressings etc burned my mouth? I had a salad a few days ago and I couldn't figure out why it was so hot? It was the ranch dressing, once I stopped using it the burning went away. I had a cold sore pop up a few days before my 2nd infusion so I was given a prescription of Valacyclovir HCL to help keep that under control. Always one more drug.

    Today I'm shaky and trying to get the water down and it seems to be helping of course. There's a reason they tell us to drink lots of fluids. I'm trying to rest but my body says NO!

    I have very little hair left. I may have my hubby shave what I have left later this evening. I'm still on the fence about that. I have scarves and a wig ready but there's still some hesitation there for some reason. Oh well, this to shall pass!

    I think I feel a nap coming on, it may be only a fleeting feeling but it's there!

    BBL

  • MFalabella
    MFalabella Member Posts: 105
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    Wench Lori, I am going to have my hubby shave my head when it is time too. I have plenty of scarves and a wig, and that falling out in clumps thing isnt for me. lol. I refuse to let cancer take my hair, I will take it myself first. So do what is best for you. Best Wishes, and I hope all SE for everyone are minimal. I just watched some videos on youtube about ports and scared myself needlessly, so I am going to crochet for a while and stay offline. Here is to a great, happy Saturday,


    xoxoMichelle