Chemo starting December 2018
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To the folks who have been through round 2, do you find the SE to be generally worse, easier (since you know broadly what to expect), or about the same as round 1? Everyone talks about how it’s a cumulative effect, so I’m bracing myself that round 2 will be harder with the SE, but would welcome any commentary from those of you that have been through it.
Bummer about your infection @LillianGish - I'm glad you figured out what it was and hopefully you can avoid the unhelpful nurse in the future!
Day 15 for me and I got the dreaded hair shed, so it’s been buzzed off. I’m guessing I will need to razor it in the next couple days, but at least this will give me a chance to get used to what my head looks like!
B74 - I would echo the other comments, prep your space so it will be comfortable and have some ideas of easy, low effort things to do when you are healing.
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Here's the list of all of us December Starting Chemo people. I thought it might be helpful to list our names:
- LillianGish
- TheNerdyLinda (Linda)
- OCperegrina (Melissa)
- Scrafgal
- emerald77
- nanette7fl (Nanette or Nan)
- MarnieMay
- Anxiouslady
- sweetolyve (Debby)
- mnsotamom74
- cherd (Cheryl)
- tcja
- phlorada
- MissouriCatLady
- Christine1975
- MCBaker (Mary)
- LizzieBo
- chapmapb
- MoonGirlJess
- BeckyJL
- B74
- Flower216
- JoyontheJourney
- AngieInAmsterdam
- WC3
- Gigi71
- SaraCatherine
- BC2chick71
- KellieMarie
- Teri1975
- wanjiru73
- JCSLibrarian
- Tsheresse
- kber
If I missed your name please pm me and I'll add it
Sorry we had to all meet on a BC board but honestly each of you is a lifesaver and more of a "sister" than a stranger
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Hello ladies,
I'm just checking in after round 2. Also I wanted to share with you all something my sweet Mama found on the internet. When I complained to her about the metallic taste of everything, she went to work. She found a product called MetaQil. It's a mouthwash designed to reduce that reaction caused by chemo. It is strong, so I will do as another user did and water it down and put it in a spray bottle. It is sold on Amazon and quick to find.
After my infusion I went on ahead and took a phenarghan instead of waiting until today for the zofran. I slept well and woke up with almost no nausea.
My doc brought up the cold caps to me yesterday and said that since my doses are the strongest possible for me, he was concerned that it would not be a good option for me. But, people on lower doses should have no problems with it helping them to keep all or most of their hair. I'm glad he brought that up because it lets me know he is treating me as a person and not just a patient.
I didn't lose any weight, unfortunately, but thankfully I didn't gain any either. Hopefully, this next three weeks will see a positive change in that area. He also said that after this treatment my immune system will bottom out in 7 - 10 days, to be extra careful. How has everyone else handled this particular situation? I'm just curious.
Onto my one funny situation yesterday. I drunk a lot of water on an empty stomach, so I had to make multiple trips to the bathroom. Which meant I had to bring Ivy along with. Well, she was more like Oliveoil..tall and thin. She refused to go quietly through the bathroom door and we had a very loud wrestling match getting in there! I was trying to be quiet (did I say that already?), but by the time I finally got her through the door every eye was upon us...lol. Thank God I don't have a shy bladder anymore. And my dh was on the other side of the room laughing at me...lol!
Well, I hope today I can go see some more caps for myself since almost all the hair is gone.
Hope everyone is doing well.
Have an awesome day, ladies!
Debbie...(0:
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Hi everyone,
Greetings from the other side of the Atlantic.
Day 5 after 1st treatment. Slept 3 days straight, somehow completely missing Christmas. The dizziness and extreme headaches knocked me out. And nausea was a constant feeling, but happily no vomiting. I’m not sure if anyone else is going through this, but I’ve been having fever-like strange and unusual dreams. Probably sleeping for so long may have been the reason.
I did try the fast mimicking diet, and believe it did help with se’s. Muscle and bone pain are at minimal, but this could just be the 1st treatment. They say chemo is cumulative, so not sure if se’s will be increasing. Hoping that the fast mimicking diet continues to help.
I’m also currently cold capping, but find it quite bothersome. Makes it difficult to take bathroom breaks dragging around an iv stand and cold cap hose. Anyone else cold capping? Is it really worth all the effort? Not sure I’m able to stick with it.
Hope everyone’s side effects are mild and manageable. Wishing you all the best this coming new year.
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Sweetlyve - the bathroom had me smiling. Me too! Both chemos. There is no way to go to the bathroom unobtrusively when you have Olive Oil along for the ride, lol.
So for all you asking about second treatment - mine was today. First different thing, I am more tired after than I remember the first one. Now, I've been very busy this last week with the kids and their significant others and friends joining us off and on, DH home for the holiday (all day, all week), more cooking and picking up and last night I didn't sleep well. So we're up for another round of - Is it Chemo or is it normal? Can't decide. The benadryl really knocked me out at chemo, slept most of the time I was there - that was definitely different. I'll keep you updated if I notice any other differences as the days go by.
Angie - I'm in the camp of, go ahead and shave it off. I didn't even want to mess with the cold caps. In my mind, it's a few months of no hair. DH has been doing that for years, I can handle a few months. It's winter, I'll wear hats. Lots of hats. But I also know it's a very personal decision and no one knows what's the right decision for anyone else. Good luck with them! I hope it works for you. Pass along what you learn.
I'm going to a party tonight, I hope I don't poop out too early!!!
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Angie... I think you're doing just fine. In my 1st week there was a day that all I could do was sleep... I slept sround 20 out of 24hrs. DH was so worried. Sorry you slept through Christmas
Becky- I agree the effects are cumulative. I just started week 4 yesterday and now 24 hrs later I'm so much more tired than I was during the past 3. The Benadryl does kick you right in the butt!!! I can't seem to sit still any more during treatment. My lower body just gets really antsy and makes sitting near impossible.
So I learned something from my MO yesterday. I tried to explain to him that where the biopsy markers are in lefty some times it feels like someone has the buttons for a dogs shock collar & they're using it on me. He got this funny look on his face and said.."there's a school of thought that says feelings like that are the cancer cells being killed off!" Wow!! Hadn't thought of it like that but the next time I get that zappy feeling in lefty I'm going to yell "Die Cancer Die" lol
Any who I took a shower yesterday morning and hair is coming out in gobs! Stuck to my hands and was all over the shower floor. . I was praying it would all just go down the darned drain. THEN wh32n I get I out Igrab my towel and start towel drying my hair just like every time ONLY this time it looked like someone used my towel on my dog!! I was so shocked!! Ive lost 1/4 of my hair so far... getting dressed is so much fun and thank goodness DH is home for a few days because he's on hair removal duty with the back of my shirts. He laughed so hard yesterday after my shower because he said I had more hair on my back than he does 8( Today being outside where it's windy I feel like an old dandelion that has turned to seed as I see white hair blowing by. My 7 yo granddaughter yells to her 3 yo little sister and says "Look Nams hair is blowing away!" Followed by giggles and then "does it hurt Nams??" So I figure at the rate it's coming out I'll be totally hairless well before next weekend. Not too sure how I feel about it but I KNOW there's not enough hairspray or crazy glue to keep it all in place at this point... thank goodness I have a lovely wig and a bunch of headwraps and scarves that people donated to me. I'll be putting all those scarf videos I've been watching to good use soon.
Anyhow love and hugs to you all. And I pray that we each can find a little humor im the day BECAUSE Laughter IS the BEST medicine!!
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sweetolyve-you had me laughing, Olive Oil, I love it!!
Nanette-great list! You sound like you are handling hair loss well. One thing I didn't think of, is how cold the back of my neck gets (I'm in NJ). I don't know how men do it. I either wear a shirt with a collar or I have to wear a scarf! And yes, I agree, a sense of humor is very important.
Angie-good for you for trying the cold capping. I read about it, but just didn't have the energy to try it. I don't regret my decision now, since its winter its easy to through a hat on, but I wonder if I will feel different in the spring. Oh well...too late now!
So I had my second treatment on Wednesday. First I met with my doctor, he answered some questions I had and then he said that I since I didn't have an allergic reaction the first time, I should be fine this time. Well...less than 5 minutes after the IV drip started, my stomach began to hurt, I turned bright red, and almost passed out. It was scary! When I opened my eyes, there was a team of nurses and my doctor around me. So now for round three-in January- I will get Abraxane (which is in the same class as Taxotere) and Cytoxan. Has anyone had Abraxane, and if so, how did you do with it? Dr did say its very expensive, so I am hoping that insurance will okay it.
Every day of this trip is a new adventure!!!!!!
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Oh Flowers you poor dear!! That was indeed frightening and I'm sooo very glad you're okay now.
I miss NJ!! And those cold winters! I was married in Hamilton Square and my 3 children were born when I lived in Yardville. I loved traveling around such cute old towns and places to see. I lived up there for 9 years before moving to upstate NY before coming down to Florida.
As far as Spring goes we'll have to switch to lighter scarves to cover and protect our heads. But there's lots of ways to wear those 8) we'll all be styling 8-D
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Ter1975,
My recurrence score was 27, almost double than my first diagnosis of 14, tamoxifen didn't work. Hubby and I prayed and the MO recommended ovaries out (er pr + her2- (first time in 2016 no chemo or rads) I had dmx with diep flap. 12 hr long surgery with less that 1% chance of it returning!!!
I feel good about my decision. I was iffy at first. But I'll do what it takes for it not to come back.
Rick on sisters! We got this!
So thankful for the group!
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Hello all!
I was DX with a triple negative tumor in November 2018. After a PET scan, the diagnosis was changed to stage IV metastatic breast cancer with nodules in both lungs. This has been quite a shock. I started Abraxane and will have my third infusion next week with a Nuelasta patch. So far no SE’s orther than sleepless nights after the steroid. I am prepared for the bone pain, but have no idea what that means. Also think about the hair loss, but so far so good. I want to do everything possible to fight this disease. I am a healthy 65 yr old that has a lot left to do with her life. I do enjoy getting information from this forum and the many topics. As a retired librarian, there is no better tool than knowledge.
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JCSLibrarian welcome! So sorry that your diagnosis changed and what a change!! You sound like a fighter and good for you
I agree as a former Lab Technician and long ago LPN there's nothing like knowledge and believe me this site has tons of info!
BC2chick71 how shocking that you're treatment didn't work...that has to be heartbreaking! Sending you and your DH tons of prayers for the rest of your journey and also (((HUGS)))
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Hello lovely ladies, I had my second infusion on 12/26. Everything went okay except I had I had to deal with the incompetence and lack of responsibility of my doctor's office. I had to deal myself with their corporate office to get the Neupogen shot. They have 3 weeks to make sure all they have all the meds but they didn't and they don't care if I got the shot or not. Good thing they just joined cancer network that knows responsibility and liability.
At the beginning of my second infusion, i felt lightheaded and dizzy and I noticed the drip is going too fast so I told the nurse to change it to slow drip. So if you feel something different right away during the infusion it might be the drip. It's better to start with a slow drip. I had the same SE as last time, red face.. feeling sick... tired.. lazy... I had to force myself to get up and to walk yesterday. I had no pain, no nausea... Today is day 4 after my second infusion, I feel better than yesterday. My worst days is the 3rd day after infusion.
Constipation... take care of it before it gets worst. Eat lots of fiber before during and after infusion. I usually eat oatmeal for breakfast and take Metamucil and stool softener (Dulcolax) the day after infusion and I will have bowel movement by the 3rd day.
For those ladies asking about the cumulative effect, I had the same questions before... I friend of of mine said the 1st is the hardest but somebody told me the 3rd is the hardest. I guess our body reacts to it differently. I am hoping the first one is the worst.
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Regarding cumulative effects: I had slightly better SEs as time went on, because I learned how to manage them better. I got better at ttiming my fast etc. My MO told me the symptoms you get on chemo #1 tend to be the symptoms you get throughout. So if you have no nausea on #1, nausea will be unlikely.
But the 'progressively harder' warning did apply to my recovery from chemo-- my "bounce back" between chemos got progressively harder. It was only a teeny bit harder each time the first several, and then the last 2 it got quite hard. So after chemo #1, i was "back" in a week and blood work was practically perfect prior to next chemo... but by #5 it took 2.5 weeks to feel normal-ish again with still very anemic blood work, and by #6 it took a full month to be "bounced back" enough for surgery (I'm still pretty anemic, but decent). Now 5 weeks after last chemo... I'd guess in another three weeks or so I will finally feel like my old self again. It made me understand why they stop this chemo after 6 sessions!
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hello fellow BC sisters
Day 3 and still pretty good. But its jus morning. STAYING positive. I have energy but started to feel the dry mouth & a bit heavy....
Nulestra went off at 4:55 yesterday. I took my claritin.
What were some of the warnings signs of the chemo crud to hit?
Blessings & strength to all!
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I took shower earlier and ended up crying and calling for my DH. He was concerned because I'm standing there with the shower door open massive amount of hair on my hands and I could barely get out the words that "it's falling out by gobs! My hair my beautiful hair!"
Poor guy who's trying not to cry with me is speechless and he just holds my soaking wet body while I cry. I lost over 1/2 of my hair tonight!! I sort of have the hair line of my balding son!
As soon as I got into the shower and I let the water run on my head I noticed my hair/scalp was hurting. I can't explain it any better than that. It was like a headache on my scalp!! As I proceeded to shampoo I knew something was wrong and I looked down at my hands and then shower floor there is soooooo much hair!!
He helped me dry off because my back felt odd which he said was full of hair. I wrapped my head in a towel and left it alone for a bit. After a while I gently unwrapped the towel and there more hair in gobs just sticking to the towel... handfuls and more tears! "DH Please come outside for a minute" and he helps brush off my nightie and all he can say is oh my God! DH said he is upset it's coming out so fast now too.(I think he knows THIS is going to be a toughie!)
I honestly didn't know how frightening it would be once it really started coming out!! I thought I was prepared but really I don't think there's a way to prepare for losing our hair! So in the morning I'll gather up my hats and scarves and give them all a good washing.
Does anyone know it fabric softener will irritate your scalp?
Wishing you all a good night and a better tomorrow.,Love and ((hugs)) to you all
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Nanettte - I want to cry with you. I washed my hair two times before Christmas and had the same thing happened. Second time was worse. Then I cut it short and had my husband buzz it.on the 26th. I feel like I haven't lost anymore since, I probably have, but it is less traumatizing because I am not noticing chunks. My shower yesterday had the same thing happen with my pubic hair, so be prepared for that. I'm sorry your going through this. I'm sorry we are all going through this.
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Nanette,
I'm so sorry this was so traumatic for you. Yeah, the only time I've really cried was when I went to the salon and had to say the words "take it all off." I can't say what your experience will be, but for me, shaving it all off, though weird and uncomfortable in the process, made the transition easier. I'd say within about 24 hours I was better adjusting to my new, temporary, normal. If you're looking for advice, I'd say get rid of it all so you don't have to see it, feel it, worry about it anymore. I'm so thankful for you that your DH was there. Get some fun hats, some dangle earrings and be the bald, badass warrior you are!
Also, in our family, when something bad happens, we give ourselves a 24 hour pity party then put our big boy, girl pants on and get back to it. Take your day to grieve or more if you need. This chemo crap is hard to deal with, you deserve to let go for a while.
Hope today is better. Sending love, hugs and as much humor as I can muster!
Second chemo round notes: Doing much better so far this time. Chemo was Friday, Nuelasta Saturday. So far, no horrific bone pain, headaches, earaches, gum sensitivity. Just think I'm a bit more tired than I was last time, but I was still able to single handedly take down the Christmas decorations then clean the house of all the debris yesterday so I'm calling this a win. Today will be the big one if I remember correctly from the 1st time. So - taking extra steroids, remembering to take the Claritin and doing so a bit earlier and an extra dose or two, taking the Prilosec (for gas pains) and taking the Tylenol and Tylenol PM at night seem to be doing the trick! (All as directed by my Nurse Practitioner, so don't think I'm just winging it, lol).
Tonight I'm going to a fancy party - one of those shindigs where you buy a table with other friends, there's music, dinner and drinks. I've never done anything like it. We bought the tickets before we really knew about the chemo so I'm a little nervous about going - afraid of pooping out, afraid I'll suddenly get the stupid bone pain. A little nervous about the bald thing - don't have a great hat for this outfit. But otherwise, looking forward to ringing in a new year! Wishing all of you a better year with no cancer by the end of it!
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Nanette..I totally understand how you feel. I have been hairless for two weeks now. Just when I think I am coping with "the new look", I accidently touch my head, and am startled, "where's my hair". Everything on my head is gone, except for some bangs, so I have been making sure they stick out of my hats when I can. As far as the scalp pain....I described it as a migraine on my scalp. Luckily that will subside. I don't think we will ever get used to this, but we will learn to cope with it.
Becky...glad #2 was better for you!!!
BC2...you are right-we have to do whatever it is to protect our future!
JCS..stay strong...we are always here for you if you want to vent!!
Wishing everyone a happy and HEALTHY new year!!!!!!!!!!!!!!!!!!!!
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Happy New Year everyone!
We just rung in 2019 in the Netherlands! And want to wish my fellow BC warriors a healthier 2019! One thing I’ve already learned for this new year is that I had no idea of my inner strength until I was confronted with this diagnosis.
We will come out of this so much stronger than we’ve ever been before! Chemo may beat us up and knock us down for a few days, but we get right back up and find a way to fight back. First thing on my list: Thursday, head to gym for an hour workout to strengthen body for round 2 next week.
And don’t forget to stay hydrated, drink, drink, and then drink some more.
For anyone going through chemo this week, game face on! You’ve got this! You are so much stronger than you know!
xx
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Happy New Year Angie. I'm is Florida USA and New years is still 2.45 hrs to go lol
Good advise and have fun at the gym
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Happy New Year to everyone! NY resolutions are to drink LOTS of water, hold my family close, fight this disease with everything I have!!! We can be a support group as well as a fountain of information for each other. Good luck on all chemo rounds. I am wig shopping next week and received many cute hats for Christmas. While there may be no cure for my situation, the journey will be an experience! Looking toward tomorrow always.
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Just wanted to say Happy New Year to all of you!!! I can't tell you how grateful I am to have the support of this group! My 2nd chemo is this Friday; hoping for uneventful like my first round.
My breast cancer navigator sent me a $300 voucher for a new wig, so I have an appointment on Thursday morning at a wig shop that specializes in helping chemo patients. I am kind of excited, but I really don't know how much I'll wear a wig.....it's been so cold where I live that I always just wear hats so far. The last bit of my hair started coming out a few days ago, so my hubby shaved it with a razor. In all honesty, it's kind of a relief to have it done. I definitely look like a 'cancer patient' now and it's kind of depressing, but I'm trying to stay positive.
I also have an appointment with a lymphedema specialist on Thursday; apparently they meet with anyone who had lymph nodes taken during surgery. It is a 2-hour appointment, so I wonder what they will talk about the whole time?! Has anyone gone to an appointment like this already and have advice to share? I'll report back here afterwards.
Hope you are all doing well and enjoying the first day of 2019! May we all have a very blessed and healthy year!!!! Hugs to all!
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My lymphedema specialist is an OT, who I knew previously because of another problem. Need to learn stretching exercises, to not get into bad habits with a changed body. Then there are the exercises and massages to prevent LE from setting in. No it is not all talk.
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Librarian, welcome to our group. We are glad you are with us.
Angie in Amsterdam, thank you for the uplifting message. Booya!!
Flower, your allergic reaction scared me just reading it! Glad you're ok now. Wow.
BCChick, Days 4, 5 and 6 were my hardest. Second round stretched through day 7. Hopefully you're through the worst of it now!
Becky, I hope you had fun at your party. That seems so fun to get out and get dressed up!
Christine, have fun wig shopping! Nice they give you such a generous voucher.
Nanette, I'm so sorry your hair experience was hard for you. Big, big hugs.
My choice was to just get it all off quickly and early. Now though, some hair is trying to grow back a little bit right above my forehead. Unfortunately, I'm starting to look like:
This situation needs immediate attention.
End of day 9 here on my second round. Kind of a rough week with the infection, lower back pain, thrush in my mouth, digestive issues I don't want to get into AND a lot of fatigue. Blood work does show the rebound is slower on the second treatment. I also heard the third round is the hardest, but I'm not giving that any emotional energy right now. It will need to get in line.
Happy New Year everyone!
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LillianG sending you hugs that your treatment is so hard on you and praying you will feel better soon!!
My "sister" (she's actually my dearest friend)) of 25 yrs) will be here soon to shave off what's left of my hair. The past 24 hours has been rough as my hair is constantly shedding. (I now understand how a Yeti female must feel.) Last night I tried putting a cap on at bedtime but it kept sliding off so I had to deal with hair shedding on my face and sticking to my neck so sleeping was really fun lol
Flowers honey I hope you are doing okay... worried about you.
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Just popping in from the Nov 2018 chemo start group with a little bit of humor.... Hope it finds you all well and in good spirits!
Hair loss - I was between a failed Chia pet and the Crypt Keeper just before my 3rd every 2 week A/C treatment. I ran my fingers thru my hair and loosened everything, then hubs used the trimmer w about a 1/8 inch guard all over. Personally, I was disturbed a lot when it was coming out in the shower and I was constantly picking strands (clumps) off my clothes and just needed it to be gone and my choice of when. I haven't noticed any eye brow or eye lashes loss yet (I'm done w A/C now and have had 1 taco tx so far).
MB1
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@Nanette7fl - I hope your shaving went well! Today my hair made its final transition, as well. It’s now gone long -> short -> very short /buzz cut -> totally shaved. (Since tomorrow is round two for me I guess that makes this day 21.) I thought of you all when the shortest hair was falling out and the dandelions and velcro comments. So true! The analogies brought some much needed levity to the situation for my anxious 8 year old, so thank you! I actually kinda liked the buzz cut while it lasted, so there was a silver lining there. Husband has been shaving his head for 20+ years, so I’ve got a good resource for this new territory. I’ve been told to moisturize, moisturize, moisturize!
I’m nervous about tomorrow and the side effects #2 will bring, but it’s happening whether I’m nervous or not, so onwards we go! Hydrating and hoping for the best!
Thanks for the updates and tips from those a few days ahead. @LillianGish, I hope you are feeling better after a rough week!
Stay strong and wishing a happy new year to all!
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OCperegrina Well we could be the balding sisters lol I have to find a really good moisturizer. I don't think I want to Oil of Olay the top of my head.
Hair up-date, my dearest friend, Linda, forgot to bring her husband's hair clippers. When she walked in the door she hugged me and cried. She was crying because the knows I love my hair. Believe me in 20+ years she's seen some hair styles on me... some wacky perms with longish hair that made me look like a Lion when it was humid (when is it NOT humid in Florida!)....long and down to my waist...short and high maintenance ones...and everything in between including a head full of french braids. While we had coffee to regroup Linda asked me "When did my little sister become so wise?" Sharon had told her yesterday "Linda, it's an honor to be asked to do this (removing my hair).". Neither of us had thought about it that way.
With tears in her eyes Linda asked me why we were doing this since I still had about 40% of my hair left and I told her this "for 3 days I've been walking around feeling some place between Pigpen from Charlie Brown and a Sasquatch!! Every thing has my hair on it clothes, bedding, floors, my couch.... I've had enough of the scalp headaches and I'm tired of Taxol and the Cancer taking things away from me so this is my way of fighting back. The only way at this moment besides treatment to fight the cancer is for me to get good and mad and try and take control of something!!"
We had a good cry AGAIN about my hair before we started taking it off and then the removal began. We got out my beautician scissors and my husbands beard trimmer
Some how it was oddly liberating
to take off the remainder of my hair. The Nair did pretty good too except for the spots on my head where there were still some patches of my original color, brownish black and those hairs were tough!! (the rest of my head was a lovely grayish white) I finished it off in the shower with a new razor.When DH came home I had on a scarf and had it tied up nicely. He looked at me and said "You really did it!!" He was beaming and proud of me. He really surprised me and had me take off the scarf and said he loved my bald head with a BIG smile. It was so nice seeing that reaction from him because I KNOW how much he loved my hair.
So onward we go. Not blindly into the night but together fighting and not letting Cancer or treatments get us down!!
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Good morning fellow warriors!
JCS, good luck with wig shopping. It can actually be so much fun! Get yourself a fierce and fabulous look!
Christine and OC, my 2nd AC treatment is on Tuesday, so I'm right behind you for round 2! Sending lots of positive vibes for you both tomorrow!!
McBaker, definitely agree with you regarding lymphedema specialist. My therapist is a god send. She's helped me so much after surgery w/ reconstruction.
LillianG, hope you're feeling better. Sorry to hear that round 2 was a bit tougher. Hang in there!
Nannette, way to go with shaving it all off! You are now amongst the Bald and the Beautiful! Since I'm only about 10 days from 1st treatment, I still want to admire what locks I have left. But I'm sure I'll be joining soon with a bad ass bald look.
Lots of wonderful wishes for you lovely ladies this weekend. xx
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