November 2014 Starting Chemo Crew
Comments
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Amy, I also got lightheaded after a bath and almost passed out. Low blood pressure is definitely from the dehydration, too (due to extreme nausea/dry heaves ... I need to request different meds because the zofran and dexamethasone are not cutting it).
Is anyone avoiding restaurants during A/C and possibly during the Taxol phase? I know I'm supposed to avoid buffets and food trucks, mostly because of germs and food-borne illnesses. I've been feeling so lousy that I can't think of going anywhere except the bathroom for five days after chemo. I'll ask my oncologist this week what he thinks. He did say I should stop riding the subway to work (easy since I hardly have time to go into the office anymore anyway, what with being sick and going to doctor appointments).
Hair issues: I wanted to tell people in case it's not too late for you: Go to a wig store before your second treatment and get a "halo" made from your hair. They cut off three inches or so and attach it to a cloth headband that you can wear under a hat. I wish I had done that.
I really am in trouble with the hair loss. I knew it was going to happen, but I just didn't feel ready to cut it off. How did you guys do it? I don't know how to shave my head by myself ... with a razor or a buzzer? Did you have a friend buzz it? This part is so much harder emotionally than I expected it to be. All of a sudden I look and feel sick, and just a few weeks ago I was a healthy, normal person. I guess I'm still in shock.
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The Zofran is not cutting it for me either. I called the oncologist's office today and the chemo nurse prescribed something in the compazine family, which made my nausea worse. When I was on chemo years ago, I used Kytril and it worked really well. I've even mentioned that yet they still won't prescribe it. I'm going to ask why when I see my onc tomorrow.
Metta, are you on the FB page? There are a few women posting their new shaved heads and they look great! I wouldn't buzz it myself, tho! I'm sure a beauty salon or barber shop would do it for free, given the circumstances.
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readytorock ...you sound exactly like me when it came to the hair. I couldn't stand seeing it come out the way it was. I probably could have held onto more of it longer, but I was flat out fed up after just one shower with seeing it just pull and pull and pull out w/every sweep of my hand. It's all part of the process ... it will get better.
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I was prescribed zofran and promethazine for nausea and I took them at the same time on day 1 and 2 but and after I took zofran in the morning and promethazine later in the day (it makes you kinda drowsy) but that combo worked for me.
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after 3 days of my head hurting when I uncoiled the bun atop my head hair is coming out ... So can't lose my long hair, finding this harder than I thought, but trying to remember all the good things that didn't happen for SEs
Not shaving yet, hoping it just thins out, is that possible
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ugh, just typed a whole post and it locked up and disappeared! Anyway, just wanted to post my head shaving pics for those of you not on Facebook. No had a friend do it and another friend was there for moral support. My friend doing it cried a little but I didn't. I was ready and I had cried a bunch last night watching this video of someone else doing it. http://shriverreport.org/a-rite-of-passage-one-wom...
Here are my pics.
I was worried about how my kids would react (8 and 10), but I wore my wig to pick them up and they were fine. I switched to a hat when I got home. Just took hat off to show hubby and realized the whole hat is full of tiny hairs so I think I'll keep wearing it so they don't end up all over and itchy.
Also, just wanted to mention my doc prescribed me the Sancuso Patch for nausea and you wear it for 5 days. It's worked great for me so thought if mention it if you aren't aware of it.
Anyone thinking of shaving your head, it's not as bad as you think! You can do it!
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That camera girl, your hair looks great!! For anyone who hasn't started treatment, here is what I did to cope with hair loss. I had very long hair. I cut it to my shoulders before surgery. Then about a month later, I cut it into a pixie, like the girl in The Fault in Our Stars. I started treatment November 17th. This weekend, hairs started coming out, not quite in clumps, but enough that I didn't want to deal with it. My husband, son and I were all home at the same time, so I let them have fun with it and shave it. Our 13 year old son thought it was a blast. I must admit, I don't particularily care for it, but it was much easier doing it in stages for me. I have been wearing my wig to work the last two nights at work. Being a police officer with mostly men, I don't even think they know, even though I had a pixie and now I have hair half way down my back. I am on midnight shift, so people that work daytime and didn't see me after the first hair cut really won't be able to tell the difference. I love my wig. Just gets a little old wearing it for 13 hours (12 hour shift and drive time in and home). Oh, the things we do for vanity. I can't seem to post pictures to my avatar or my wig. I'll keep trying. Maybe I'll get a facebook invitation soon and can load it there.
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I know it's hard to tell but it's pulled back into a ponytail; but it's my new wig.
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compared to how it was before. When pulled back for work, it looks very similar.
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Chris I feel the same way, I'm trying to talk myself into believing that it's not that bad, it'll grow back... but I can't escape dreading this! This may be the hardest part to accept. Cameragirl, way to go! That's sooooo brave of you. And u can rock a short do! Looks good! My heart drops just thinking of the day when I'll say "ok, let's shave it all off". Which may be sooner than I think. I took a mirror to look at the back of my head today and saw a quarter size bald spot, and my whole attitude changed, had gotten really depressed for a min. I told my husband, he said he noticed it but didn't want to say anything. He's just waiting for the word and he's gonna fade me lol.
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Mrshq1, I know it was hard losing all that beautiful hair but I must say the wig looks very natural...very pretty pics!
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Hi--How are you doing Mrs. D.? I, too, work with children and plan to keep working during chemo (I start on 12/10). How has it gone for you? I think being around the kids will keep my mind off of the chemo/cancer but, on the other hand, how to avoid all those germs?? Best to you--
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MrsHq1, your wig looks great!
That Camera girl- You look great!! I am inspired by you both. I think my balding adventure will be around mid month…started dc 1.
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Erica, I agree 100% with you I cant escape dreading the hair loss, it seems so far way to get it to grow & be long again... I conditioned it tonight and a lot came out, so hard to see... I need to accept it... But God has been so good to me in my life, this too he will restore to us, we must have faith and press on together. I'm sending gentle and commiserating hugs...
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Mrshq1, I love your wig, you look beautiful and I would not know the difference if you didn't say so. You've made me feel a lot better with those pictures, I wasn't sure if a long hair wig would work, but you've shown me it could. I'd thought no for wigs, but you gave me hope tonight and for that I'm most grateful! Thank you for sharing your pictures
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Thank you cc3373, bonnied and enlm20Erica. For anyone thinking about a wig, I have to tell you I had a blast shopping for it. I thought I would cry, but really everyone was so nice. We have a wig store here that is popular with the transgender/gay community and everyone in that store was amazing. They turned it into a mini party. I could have bought more, but I bought the wig you see, a hat/halo so I could throw on to run in and then a bright pink wig in a bob cut because my son wanted something fun. I couldn't do this without the wig. I feel so much better wearing it. I don't look nearly as awesome as THATCAMERAGIRL does bald. I try to avoid mirrors because I think I look sickly. Ive never really worn makeup but I am going to have to learn. I will try to take a picture this weekend when it is not pulled back into a ponytail. Good luck to all of you awesome women, no matter how you choose to get through this.
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Ladies, I little bit of my experience...and some pics to see if it helps you.
First time I shaved my head was one day before my sister's wedding. I was hopping to be able to keep it until the wedding but couldn't, I already had bald spots and didn't want to look sick. So I shaved it and used a wig with my MOH dress...I was so upset! But then after it was done and I was ready and all dressed up I realized my hair was NEVER gonna look as good as the wig LOL. Now this was a wig that you tape to your head, and you can keep for several days, wash it, go into a swimming pool, and everything. It is great if you don't want to keep looking at yourself bald in the mirror.
So this is me on my sister's wedding:
After a few months my new hair started to grow, so I didn't want to tape the new wig into the new hair, cause I was afraid to damage it. So I bought a normal wig, and this is how I looked (I'm the one on the right. At this point I had gained about 15lb, that's why I look so different):
After that, I let my hair grow and when it was like 1-2 inches long I got hair extensions. The bangs were those "fake" ones that you can buy anywhere. This is how that looked:
And finally I got sick of all the trouble, and my hair was long enough to look fine to me so I took the extensions out and dyed it super blond. This is how long it was 1 year and 3 months after I finished chemo:
As you can see, (at least I don't think so) I never looked sick. I believe we just have to put up an effort to keep feeling "normal" and pretty. Unfortunately I did not look good bald. I looked like Gollum from lord of the rings! (haha!) So I did what I had to do. I just posted this because when I first started this I visualized myself everywhere, with my friends, bald, with scarfs, and that was simply not me. I didn't know wigs could look natural, and how many different options I had. And this really helped me get trough the whole thing. And now I hope it helps someone too! I SO respect and admire the ladies who embrace the baldness and don't wear anything but their own beauty, but I just couldn't...
Now I'm back to step one...chemo and loosing hair. I tried cold capping and I haven't lost all my hair but lost a lot so I'm wearing a new wig. I don't have pictures of it, I'll post one later. Oh and just so you know, my original hair is the one on my avatar picture!
Sorry if this ended up being too long...
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Bonnie congrats on round one done! I hope you're feeling okay.
Marcela, you're right you never looked like you were going thru anything. The wigs looked very natural and your hair grew back FAST! Thanks for sharing this with us.
I'm with you Chris, we gotta accept it... At this point it's inevitable. But these ladies are proof that everything will be fine. Even tho we know this is real, it's like the hair loss is visual proof that this is really Real and is really happening. But we'll get thru this just as we have everything else.
I'm just wondering, is anybody else going thru expander fills during chemo?
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enlm20Erica I am... just finished expanding yesterday actually. I'm glad not to have to keep going there every two weeks...
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The hair thing...so much harder than anything else for some reason. I had my second chemo on Monday and am just sitting here waiting for it to happen! I don't want to leave the house for fear of clumps of hair falling out! I am on Taxol so I know it supposed to happen right about now. I have had fun shopping with my daughter and friends for scarfs and hats and a wig which made it a little better. Praying for you today that you will embrace every step with courage:D
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Wow, you guys, thank you so much for posting pictures. You all look beautiful and happy ... attitude is everything, and I need to up my game.
Mrshq1, you look awesome, Cameragirl, thank you for showing us that the process can be almost fun, and Marcela, I love all your different looks. Hair extensions sound so fun and Hollywood. I will try that. Thanks, you guys; you just made this a lot easier.
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Erica, yes, I'm getting expanded during chemo. I go a few days before.She wanted to do the fills the day of chemo, but that would be too much in one day for me!
Marcela, you look great!
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Hi all, great pics!! Thanks for sharing, it's so nice to come here and get inspired by everyone! Marcela, gosh your pics look great, you're right you really never looked sick. I'm with you, the bald look will not be for me so it's good to have some nice options with wigs and even hair extensions once it starts growing back. Never thought of that! Erica, I am expanding thru chemo too. My first fill 2 weeks ago was traumatizing, however yesterday's fill went just fine! My tissue was hyper sensitive for the 1st one, so I had to work that out with massaging the tissue. I also asked for Emla cream this time so it was all numb. So much better!
I am still feeling pretty good. Very minimal side effects, I am on day 10. My white blood count was very good yesterday so doc says no need to avoid crowds. Probably the biggest side effect was some strong lower back pains that really felt like I was in labor. But that only lasted a day.
Hugs to you all and prayers that everyone is doing well and still smiling!
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It's all about the hair now, girlfriends! Thanks for your inspiring pictures. You look fabulous mrshq, and so proud of you in uniform. Marcela, you are gorgeous any way you slice it. Here are some of my hair shots. Three weeks after my first chemo, I was starting to look like a monk with a huge bald spot at my part, plus I couldn't stand the hair falling out everywhere and getting on everything. I was ready.
So it was back to my stylist friend who did it for free. Scary but liberating. She left about a 1/4 inch, but I said to take as much off as she could:
She styled my wig to better fit my face. This is synthetic hair but very natural looking, with a monofill (rather than lace) front, so you can part it anywhere without showing through. It seems like you get what you pay for with wigs. I ordered a $60 one on line from TLC direct and it looked pretty cheap, but I can return it with no problems. This one was $300 from a local boutique--maybe overpriced a bit but they had wonderful personalized service. This is one day after chemo, still on steroids. I wowed 'em at the chemo lounge when I went in for my neulasta shot with the wig on.
This is a halo that I got from tlcdirect.org which is run by the American Cancer Society. They have some interesting items. I am wearing this over a net, but that was before I shaved my head. Note that they have velcro that you can sew into a hat to secure the halo, but it felt pretty secure to me.
I like the way it looks under a hat (bought at the same site) and is more comfortable than a wig. This halo cost $30. Someone asked about a "wig hugger" from that site. I ordered one but I will return it. It is a funky plastic covered gel band that looks like it would get sweaty and slippery. I called them and asked if I was supposed to take the plastic off and they didn't know, so it's going back. My wig is adjustable and that is all I need. TLCdirect.org also sells mesh caps to hold your shedding hair at night, but by the time my order arrived, I no longer needed them. Great that they can be returned.
Here is the halo under my Buff, which I wear to yoga class (when I feel up to it). It feels very natural and looks like me. I may end up just putting on the Buff or wearing a scarf over my bald head.
This is what I'm wearing around the house over my bald head. Hats with Heart 3-seam Chemo Turban through Amazon. So soft and comfortable. It looks better than in this picture. I also got a couple of sleep caps, one from a friend passing hers on which makes it special. Keep me warm and keep the stubbles off my pillow.
I feel like I've been going down a checklist. I'm doing things that I'd dreaded at the time it feels right for me to do it. Once I was ready to lose the hair, it actually felt great. No more shedding or cleaning up of loose hair everywhere! Only disappointment is that there was a whole lot more grey in those stubbles than I thought there'd be. Do it when you are ready. I'm glad I did.
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TallyLassie - I LOVE your wig!! It looks very natural on you, and it looks like natural hair!! And I agree that with wigs you get what you paid for...I ordered one online for very cheap and could never use it...so I ended up donating it! I understand what you mean by "I was ready"...I think we just know when we had enough right? It felt like torture to see all that hair falling, and showering while being bald is just delicious! I felt so clean! lol
I've never seen this "halo" before, it's very cool! Specially for summer... I'll see if I can find one...
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Marcella, thank you for the pictures of all the stages, you look amazing in every one and definitely don't look sick! Hugs, am so sorry you have to go through it all again, am keeping you in prayer! You don't know how much those pics helped today (am crying off & on today) as a lot of my long hair is coming out today (1 pass of the hair brush fills it), I haven't been wig shopping yet and don't know if I can shave it, but you're giving me a sliver of hope about having a wig and I thank you so much. It definitely was not too long of a post and looking forward to your new pic
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Erica, I know, I'm struggling a lot today, really hard - which is silly because there is so much good I can say about what has not happened... Love and hugs to you!
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Marcella you are beautiful in every one of your pictures! I hate that you are going through this again!! Stay strong!
TallyLassie thank you for sharing your pictures. I love the one au natural!! You have beautiful eyes and they just stand out in that picture. The wigs all look very natural on you!!
MrsHq1 you are lovely! The wig looks very natural.
That Camera girl You are a natural beauty. Hair or no hair you can't hide that!
I thought the hair thing would bother me more than it does. I have had long hair for as long as I can remember. It started falling out on Thanksgiving day and by Saturday if was just terrible. In the shower it just kept coming out!! That was the only real bad moment for me. My husband shaved most of it off for me on Monday and like many have said on here it was very liberating! Also, it had been very irritated and painful to the touch and now it is better. I kept some length like someone here mentioned (I can't find the post but I do remember reading it!) to try and help loosen the hairs that are left.
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Marcela Dee and Leslie, I go in for my 6th fill tomorrow I go every week 50ccs each time. I will be at 400ccs tomorrow they initially put in 100ccs in each expander after surgery. Marcela yaaay for being done! The first few fills were very easy and painless but the last two I felt terrible pain after almost like ribs and chest were caving in! so now once a week my ps prescribed percoset and Valium to take an hr before i come to get filled, and it's been working, I just hate to have to take it with already having chemo running thru my body... but the pain is almost unbearable. I want to get to 500ccs and see what that looks like, maybe bigger 😎 lol.... but So far they're coming along nicely.
Tally omg I love the looks, I think the Halo with the buff is my fav! Although they all look very natural and cute!
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TE ladies, did you ever have bleeding where they put the needle in for the fill? I had quite a bit last time. I wonder if it was caused by the chemo because it didn't happen before
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