Starting Chemo September 2015; join us!
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shopgal, or others, re toothpast - I find Act for dry mouth works really well. tastes decent and moisten sore mouth
love all the halos on you pretty ladies, looks like you started something southerncharm!
we are all beautiful bald! defiitely liberating!
Amy, my heart is breaking for you. I hope there will be some good come from this disappointment. Regarding your body image breakdown, I made the mistake of looking at my mx scar in a magnifying mirror! couldn't stop crying. Got over it, moved on. no choice. six weeks later my scar looks really good!
Lisa - love the idea of posting pics of costumes, who is in?
Katie you are so cute bald, beautiful smile.
sleep well my warrior friends! love and hugs to all
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Grey - good luck this week. i am so proud of you for hanging in there and being brave! Will be thinking about you on Friday
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Shari Sheperd was on the Steve Havey show last week and she was talking about her line of wigs and why she designed wigs. It was interesting segment, try to find it online
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Grey --- so relieved to hear you have your port placement and chemo scheduled! Hoping all goes boringly well, no surprises, just gets DONE.
Amy --- so very very sorry to read about your unsuccessful adoption. I have no words, just (((((((((hugs)))))))))
Skittlegirl ---- hoping all your thyroid nodules are benign (many are) ((((((hugs))))))
Seeing all you ladies in your adorable buzzcuts and halos and hats and wigs is making me a little bit jealous --- looking in the mirror, the style looking back is "moth-eaten concentration camp" but I am still too shy/scared to go let the hairdresser buzz it all off. Today's excuse: based on last cycle, my white cells are at their lowest, so I am too infection-prone right now. Sigh. Big coward here. At least the scalp skin stopped hurting, although what remains of my hair is dropping faster than my shedding dog's fur.
Wishing everybody an easier day than yesterday ((((hugs)))
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This spoke to me:
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greyt, I'm seriously ready to kick the sh*t out of that ex of yours. Thank goodness you've kicked him to the curb the way you will cancer. 😠
I've been getting treated with Flagyl for a believed C. difficile infection. Other than making me crazy sick, it still hasn't resolved the situation (order than reduced the frequency of rushing to the bathroom every 45 minutes). What is going on???
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I am not much of a hat person, but you ladies really make me want one of thone halo wigs. I ordered a full wig but it hasn't shipped yet. Those that ordered from cysterwigs, how long did it take?
I had my infusion done in the vein on top of my hand. There is a light line along the vein from my hand to forearm. It is sore and hard in spots. 😕 they said they would try another higher up but I wonder if I should just call it and try a picc. I had lymph nodes taken from the other side so this s my only option besides a port. I don't know what to do.
CarolinaAmy- hugs. I hope things take a turn for the better for the adoption. I am sorry. I can't imagine what you are going through.
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TFOXY get the port. That chemo crap can make hard spots permanent on your arms. My arm bruises won't heal up here 9 days after grumpy nurse stabbed the shit out of me. The port was scary but infusion was so much better after it was done.
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AnnieB - I apologize for combining two replies in one. (I couldn't find your kind note in the forum (newbie!).) Thank you so much for asking after me. Physician Assistant believes she's found reason for my Round 1 immediate and miserable nasea, tweaked Round 2. No nausea at all for first day/night post-chemo! I'll probably get some nausea yet, but not having it for at least one (less?) day is a blessing. How is your Round 2 / Day 2 going?
TFOXY - Agree with AnnieB - get the port. Had a 7 day hospital stay 17 years ago during which they drew blood every 4 hours, 24/7. It was straight-up miserable being a pincushion. Trust me, when they move to "alt" sites like back-of-hand, the pain is excruciating.
I had no problems with my Sept 22 port insertion and (two chemos into treatment) and testify it is far superior to sometimes-stabby caregivers. Keep us updated! - Lisa
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do we count chemo day as day 1? I had chemo monday and nuelasta tuesday. I'm starting to feel the Nuelasta SEs this morning. As soon as kids are off to school I'm drugging out and going back to bed. I've had a cramp in my foot for 12 hours. The sunburn feel across my neck and shoulders has started. I'm feeling kinda gross but it's not full on nausea yet. I'm going to take something before it gets there. Compared to round 1 this is starting out manageable. We shall see as the day progresses. The orange pee from the Adriamycin stopped so that's great. It's a bit disconcerting to see. A non blood color would be better. Other minor SE are dry mouth, a bit of ankle swell, tired, weepy dry eye, generally cranky. I suspect the steroids will be out of my system today before I beat someone up or eat a months worth of groceries.
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Wow, you are all troopers. Much respect and love. I'm still on IV abx. After 5 days in the hospital on it I've now been on home IV abx for a week. Infection over right tissue expander is looking better. Was quite the scare of if I had to have it pulled out since prior to the hospital, I did max mg of Amoxicillin pills. Last bag of abx is tomorrow night then I'm on prophylactic abx all through chemo. Not cherishing that as I'm not a pill popper even though I know chemo wrecks more havoc than abx. Just the combination I think is upsetting. Before this cancer shit, I rarely even took a Tylenol for the very occasional headache I got much less anything else so this is like wow for me.
It's 5 am in CA. In 3 hours I meet my new MO. Not sure I'll have a plan with schedule and details on meds though the other one was thinking AC 4 rounds every 2 wks and Taxol 12 wks. After that appt I go to surg's office for them to see infection is ok now per ps and infection doc so I can get a date for port sx. Once all this is in place, before port sx, I'm getting my hair buzzed short. Going to miss my nice wavy/curly shoulder length hair. I have androgenetic alopecia so I know all mine isn't coming back. I've been thinning at the top pretty badly for 10 years but with my wavy type of hair, I'm able to do brush backs/comb overs to hide it sometimes needing some scalp makeup to cover the areas. So I'm trying to prepare myself that my hair won't be coming back in all it's glory after all is said and done.
Wishing you all a better day than yesterday. Read your stories every day. Helps me prepare for when I start which I'm thinking is in 2-3 weeks. xo
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I visited the lymphedema specialist today. She was very positive, said 7 weeks post-op is still "early days" and believes all the hand swelling is temporary. Confirmed the sleeve and glove from the hospital PT are wrong size, wants to try wrapps instead first. I am curious what others are getting for their lymphedema. Gave me lots of "homework" to read, and I'm supposed to learn how to do this to myself for sleeping:0 -
(((Artista))) what a bag of poo you've been handed. I'm glad you're home though. I hope you're feeling ok. Yes I agree all these pills suck. I never took pills before either and now there seems to be buckets of them.
My bio hair was thinning really bad too. I've been reading on the regrowth and it's possible your new stem cells for hair can get reset and it grows back better or at least different. It'll be curious to see how many of us get different hair back.
Good luck with the new MO. Feel better quick!
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I hope the wraps help tessu and you can pick up how to do them good very quickly. Looks tricky. Good news if the docs correct about it going away. I'll keep a prayer for your fast recovery!
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Tessu, I'm so glad to hear that this may be just temporary post-surgical nonsense! Let's pray for that one!! And it's silly, I also wished we could all be in the same place so we could help wrap your arm up at bedtime. LOL
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Thanks Annie! You're sweet. I was going to just keep the picc line in to spare port sx but I've read how much better the port is. You don't have to worry about getting it wet and it's safer/better to have for the longer haul past chemo, which I plan on keeping if I can for future use. Left arm had nodes taken out so it's don't mess with it. Right arm got 3 blown veins in it from RNs who weren't savvy with my small veins and now a picc line. So I was wearing a do not draw blood or do bp tag on both arms in the hospital! Pretty funny. They did bp on my leg which is always higher than the arm. xo
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Annie..yes, chemo day is day #1. I'm headed for labs today and meet with MO. Infusion #3 is tomorrow..oh yay...and I have tickets to the Blue Jays baseball playoff game tomorrow afternoon..hmmm..what are the odds that I'll make it? lol. My sons are ready to step in and go with their Dad, God bless them. Always thinking of me, taking it off my shoulders
If its like infusion #2, I'll be ok for the first few days, then the heavens open up with nausea that won't give up.
SourthernCharm..yes indeed, there are three of us with the same halo, same colour I believe as well. How's that for a testimonial!
Grey ..hang in there girl, you're doing great. One thing I kept in mind when shopping for a wig is that is would have to keep me for more than the chemo therapy duration. While my hair grows back, I will still be using it so I'm looking at about 8 months or so. I look at it as a long term investment
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Artista - I hear you on the pills. I am still on my oral antibiotic. I swear those damn pills are multiplying on their own and I will never finish the course. Sadly the MO overruled the surgeon so I have to finish them up. Blah.
In good news my fellow October 2012 moms are amazing. We're a bunch of internet friends all over the country who were due with babies in Oct 2012. After a crappy night of restlessness plus my taste buds feel like they have been burnt off, they started tagging me in pictures of themselves with their daughters wearing pink for me. Very sweet of them and makes it a little easier to face today.
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Yes, chemo day is day 1. I'm also not a pill popper but right now I'm taking everything I can to keep side effects manageable. I'm just trying to repeat what worked last time and improve on the rest (mostly mouth issue). And, this time I don't have the hair to stress about. 😀
I'm so sorry for the extra hardships some of you are dealing with. Cancer is bad enough on its own!!!
I went to the look good feel better class yesterday. I am not much of a makeup user so it was helpful in that respect. I had an allergic reaction to the eyeliner in my kit and my eye did not stop burning for a couple hours. Good thing I only got it on one eye before it started. They give you a whole face of free makeup but I recommend checking the safety of it on the Skin Deep app or something similar. Many of them rated high for carcinogenic products. Check all your usual products also, you might be surprised what you find.
Wishing everyone a better today than yesterday. I think that should be our new motto.
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Yeah Skittle that's the one thing with abx is you must finish the course even if it is all clear now. There's no way around it no matter you are in the clear now. I'm going to be on Bactrim DS. Hell I forget to take multi vitamins and my Ca pills. I'm also low on D3 and have 2000mg pill I need to pop daily but even though it's on the counter in sight, think I do it?
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my BP bottomed out after I took my BP meds. I sorta fainted. I'm not sure what to do now.
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Annie: I'd call whoever is prescribing them as well as your MO to see what now. One thing the chemo class I went to said is don't hesitate to call even if you think it's nothing or you are fine now. I have every provider of cares # in my phone and am the type to call if something is off. Unfortunately and fortunately they know me well. Hope it gets resolved.
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CarolinaAmy I had a bout with c-dif like symptoms last year after taking clindamycin for a root canal. My family doc recommended I take a probiotic with the flagyl. Maybe ask your mo about that. I took it for a good 2 weeks and it really helped my gi system rebound.
Skittlegirl we are here for you thru everything. Lotsa hugs and prayers for you now from me.
Twiggy I go to the look good class mon so I'm glad you said that about the makeup. I'll be careful about what I put on my face.
Katie your buzz looks like mine. Only I am more patchy.
Annie regarding bruises that won't fade don't feel bad I still have a faint outline bruise from when the nurse blew my vein at my port surgery on 8/30. Seems chemo makes us slow healers.
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I don't think I need them cuz I'm fine at home but at doc appointments my BP is scary high and since I'm fat they assume I have high BP. I tell them it's anxiety. No one listens.
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southern I love Walmart for hats too. I am a hat ho.
I went there sun and found in the accessories dept a bunch of cute buffs that are super lightweight soft and that I can use as head coverings around the house. The buff looks like a larger size headband that covers your whole head. I watched a video on you tube that showed how to wear a buff. You just slip it on your head and tuck the ends under. Plus they were under $4. They also had wide headbands to wear under hats. Yes Lilaclaire I was inspired by your cute look.
Now I need to get one of those over the door shoe pocket thingies to put my hat/ scarf collection in so I can actually see what I have. Alas the wig is still sitting alone in the corner of the bedroom until I can think about wearing it again. It prob thinks it's being punished.
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Annie- Yeah, bp goes up with anxiety and even just visiting a doc's office and not feeling overtly anxious. Plus they take bp shortly after you just entered the exam room. I just walked some so yeah, bp will be a bit higher. What's funny is a nurse in the hospital didn't realize bp taken from the leg is going to be higher, sometimes really higher like was my case one time with a 160 and 200 reading. She was like you need to go on bp pills. Uh no I don't. I know I was 120 not long ago and goes to 130's and low 140s. My aunt just stopped taking them because she felt they were overreacting- esp if it's not a doc you've been seeing for years to know your track record. Some docs love handing out pills when really it's not needed. I'd discuss this or just stop and see what happens. Take your bp at home daily at least if you aren't doing so now.
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Started my steroids this morning. Chemo #2 is tomorrow.
I'm getting sick of my wig. I should have worn my halo to work today. I think I'll wear it to chemo tomorrow with my hat.
Dreading starting the cycle back up again...
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Southern is that the Renee of Paris halo that's your favorite? I have the tlc one and I hate it
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My BP is good now. I don't know what happened. I have an appointment with my primary Friday. I think I'll try and get off them because they make no difference at the appoinments. It's still high from that white coat syndrome.
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I think I got my Rene of Paris halo in a different color. Mine is Ginger Brown. Do you know what color yours is, Southern?
I like it so much that I was considering getting one of their synthetic wigs to try.
Annie - I'm glad you're feeling better! Hugs!
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