Starting Chemo in February 2016?
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Dgail- ((hugs)) And a high five to great neighbors! Mine snow blowed our driveways;)
Reflect- if you have the ability to go to Dana Farber... Do it. I have a fantastic mo. Message me if you want her name. People are flying in from all over the world to get treatment there. And we can drive there... Also, my primary checked his ego in the hallway before he saw me and said to do everything in Boston.
Chambo- Get that dimple looked at for piece of mind. Get an ultrasound.
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chambo I would definitely get that nipple looked at, I would probably start with the breast surgeon if it was me.
I am now on day six after docetaxol, I think I'm starting to see the light at the end of the tunnel. I felt pretty crappy most of yesterday, but by evening I started coming around and I ended up staying up watching TV with my husband until 1030. Then I slept until 10 AM, current time! I am in less pain this morning, still feeling weak and dizzy if I do too much, but not in a complete fog like I was yesterday!
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chambo- you are not being paranoid. I thought I was too. Mine is new and on the breast I still have. I played all the scenarios...two different cancers, in two breasts...rare. Hmmmm...then well it had been checked before my far right side surgical biopsy....maybe just infection. Well, turns out my BS is concerned enough to move forward. It's just sensetive and pinkish red and some days seems worse with thickening and soreness. I'm glad I a saw the photos. It's scary t think of inflammatory breast cancer. I read about it. Nothing is to big or too small to ponder. Hugs
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Glad you're getting a little stronger LTF. Hope it gets better and better for you.
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Dgail- many healing thoughts to you & your dh. 💕
LTF- I'm glad you're feeling better. I hope you just continue to gain more energy.
Piper & Chambo- I pray your breast issues are non cancerous. Would the treatment you're having now benefit it? Please let us know how it goes.
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Thank you ladies, thinking of you all! I finally sucked it up and took the Hydromorphone , not for the body pain but for my headache. I'm so glad I did! 1mg and the headache was gone. It didn't make me feel dopey or woozy at all, it actually made me feel more alert because the pressure in my head was gone. So mad at myself for resisting it for a few days, but I know now!
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Chambo, you are not paranoid, you are taking good care of yourself, get it checked out!! We've already beaten lottery odds to land where we are, why wouldn't we think it could happen twice? I sure hope not but we've learned to act now. I also think the BS is the first person to check with.
LTF, I hope you continue to feel much better. Chemo is a bugger.
Piper, what is the plan and timeline for evaluation? God, I hope it's something easy to treat and not cancer.
MLP, I'm messaging you now.
I am still on the good end of cycle 1, diving back into the dark this Thursday. Hair coming out faster and faster. My scalp feels sore and very sensitive. Why can't my leg hair fall off first?? Or the stubborn hairs on my chin??? What's up with that? Working on caps tonight as the wig isn't ready until Friday and I'm not gonna make it. When and how is the best time to shave it off? DH thinks I should use Nair or something (so it won't hurt) but I doubt a chemical is a good thing to put on my skin.
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HI reflect,
Sorry to hear your scalp is so sore. Please do NOT use Nair on it, you don't need a chemical burn on top of everything else. What I did was use an electric razor, used the "4" setting for the sides of my head and "6" for the top of my head so that at least I had some hair which was much easier to clean up than my long blonde hair. Do you have a silky-like head covering for sleeping? This will allow your head to move smoothly across the pillow during the night and will make you less aware of your sore head.
I agree with you, why don't those stubborn chin hairs fall out first? But I will tell you, they'll be gone until chemo's finished, so you can put your tweezers away for a while.....
champ - I concur with everyone else here, please get it checked out.
Hang in there,
Jacklin
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thank you asher 💕
reflect- I go to my main city cancer centre for an appt Friday morning. (primarily for chemo check up in person) In the interim, my surgeon here should have an ultrasound organized here before I go and has sent her magnified photos. It has gotten more red and burning to the touch. Without writing a diatribe, I don't even know if they are on the same page. I've done what I can do and at least it's being looked at. For that I am grateful. IBC isn't an easy dx I hear. My BS is doing everything possible and putting team in the picture.
My stubble is turning white on the sides and my once pretty smile is missing the partial it had for one missing tooth. Just can't wear it. Still, I put on a spring butterfly scarf and went out for a little bit.
Butterflies are meaningful to me.
💕Piper
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reflect I went for a big buzz (to the scalp) about one month after starting chemo. By then the fuzz was patchy and silly and I decided I'd rather be bare. I've actually shaved it down once since. I still grow fuzz but it's so fine now I can ignore it.
If you don't want to shave yourself any hairdresser can do it with clippers.
I was so scared to do it but once I did it was such a relief!
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Haven't checked in in awhile. I WAS cold capping but unfortunately it's ended up NOT working for me. I have lost over 70% of my hair and it's at the point where I HAVE hair...but I have bald spots on top and thinning all around the crown....so I cannot leave the house without some type of covering. I don't know why it didn't work...I followed the instructions to the letter (just a tad OCD) so I'm at a loss. Anyway...for someone who HATES having my head covered (since I was a child) this is going to be HARD and UNCOMFORTABLE....LOL...but I have no choice right? Had my 2nd round last Friday and starting yesterday I'm finally over the hump of feeling crappy! It was BAD this time around. The nausea ALL DAY LONG...no taste buds....not being able to eat....blech...it was bad. Got my exhausted MORE this time...I could sleep all day and night if I could. Never had much bone pain from the Neulasta...no neuropathy, mouth sores...did get thrush again....just tired. My next round us on my daughter's 22nd birthday and my last is on my dad's....how weird is that? Lol
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LTF- Happy to hear you got relief!
Reflect- Isn't that just fine we win this lottery?! Good to hear you're feeling better. I'm definitely in agreement. There are plenty of hairs I'd much rather go first 😂 I held onto what bit Ihad until showering just became ridiculous. Dh shaved it down with the buzz cutters.
Piper- you look beautiful! The colors in your scarf are so pretty with your eyes!
Suzted-I'm sorry to hear the cold capping didn't work. ((hugs))
I'm hearing all those who've just had #2 report fatigue, so I'm trying to get stuff done about the house to prepare for the possible down time. I've also been out a bit the past couple days. Anyone get strange reactions from people while you're out w/o a wig? I wore a hat. Mostly people stared, but I've had some people completely avoid me, too, like cancer is contagious 😂 Maybe I'm being overly sensitive.
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Hi Suzted - nice to meet you. so sorry about your cold cap experience. Nice to meet you too Jacklin. Wishing you both well
LTF - hope your pain alleviation lasts now.
awww thanks asher I feel like I can do some spring cleaning today. hmmm....I say that. I have to see how day goes. I am more awake but feel lazy somehow. I don't think I get strange looks really. Some sympathetic maybe, some like "wow" looks. I cover up only due to sunshine and sure will when completely gone for protection. it doesn't bother me to have my hair shorn. wishing you well today my dear.
okay deep feelings time from Piper time.
I truly feel free without hair and my breast off (looking forward to the right being gone). I don't even know if FREE is the right word but just not any less than. Then, the reasoning hits me. I look at myself in the mirror all the time. Not in a vain way. I look different. My face looks like it is changing with marks, pocks, I look older somehow. That I admit bothers me. In the grand scheme it shouldn't right? I feel guilty for such thoughts. I am told "cure" "survivor" and I am not primarily NEGATIVE at all for the most part, yet cure seems so far away. So many unanswered anomalies. When you hear someone on your team tell you " we are hitting this so hard because you are so young and we want you here" kinda hits ya, you know. Age has nothing to do with it really. Everyone at any age is important in survival and is supposed to do just that...survive!. It just hit home. Having a young family and we have newly moved; hitting a new exciting stride in our lives to grow in adventure and new things. together. on a funny note. my nose is cold. ice cold. a lot. we joke I am now a healthy puppy. I haven't had a hot flash per se or even a fever but my nose....ice!
all of you...love you...let your pink flag fly! onward and upward to a new week!
Piper xo
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Third chemo went ok, I guess, except for the fatigue. I've found that *any* activity Days 3-6 makes me lightheaded. I can't even descend a flight of stairs without stopping and gasping for air, let alone climb them.
Dose dense is the worst. No recovery time at all. I just basically woke up from four days' sleep. And as my body tries to recover ASAP, it's really hitting me that hubby is leaving town before my final AC infusion next Monday; he won't be here at all for my fourth and final recovery. (Final AC; I still have 12 weeks of Taxol/Herceptin/Perjeta after. But they keep telling me it's not nearly as bad.)
Here's hoping I have the energy to nuke a lump of casserole, or at least make dry toast next week.
Trying so hard to stay positive and silly. Failing today. At this point, I just hope to survive holy week.0 -
sorry Elise that will be rough. If you have a couple good days do you think you can prepare some things to put in the freezer? Maybe call on friends to bring you food?
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Hi Ladies jumping in from the January chemo group. Make should to call your local ACS for a free wig and to sign up for their look good feel better class, they show you how to do your make up and you get some great full size products. Also get to meet some great ladies going through what you are.
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Piper - I know what you mean...I randomly was watching movies yesterday and 2 for 2 hit "cancer story" movies. Really? I don't need Hollywood helping out my imagination right now. I seem to be about 50/50 with the hat/scarf stare. Some do the sympathetic look and then manage to get on with their normal faces...others just STARE. I am not brave enough to go out completely bald headed, which is weird for me. Most people would assume that is my character - sort of FU girl. But I think it is more about being seeing as "sick". At work is a bit different now, most know. And on Friday we had a funny conversation with a team from our Engineering dept where 3 faculty are bald, the dean is bald, and the secretary has alopecia and wears a wig daily. I said maybe I needed to temporarily transfer so I could fit right in...lol. I felt pretty comfortable there.
So far this round, no nausea - yeah! I think my energy may be starting to come back (This is Day 5). Now I am just hoping to avoid the itch when that Nadir time arrives...eek!
Susled - sorry about the Cold Cap experience - perhaps the fact that you still HAVE 30% of your hair is the success with your type of chemo? I know mine wasn't going to leave me with a single strand. You might not have done anything incorrectly - these are just super powerful drugs. My MO warned me the Cold Capping wasn't always successful - the cocktail mix may be the reason.
I have a labs check with my MO on Friday. I'm going to mention my concern over the retracted nipple to him then and see what he says. I did some research and most say things don't lay normally until 6-9 months post surgery and things will change up based on the various cavities created. I would like to know if they plan post-chemo follow up mammo/mri anyway, so this will start that conversation. My BS really is just a surgeon who follows their orders - I feel more comfortable with the MO thinking about the TN followup.
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Sorry for your sufferingElise! I agree with LTF. Hope you can get something in.
Nice to meet you Sherri64
You got it chambo. Even watching the cooking show chopped jr., the little girl cooked for her mom through breast cancer. Donating her money to that. My surgeon gave me my dx through local hospital testing. The team at cancer centre didn't come into it until pathology in after surgery. They all know my case so I'm comfortable talking to any of them. The big centre team is who will make big decisions in future I assume.
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Chambro- so true about the Movies haunting you. It's like you can't get away from it!
Piper- your deep reflection hit home. I can see so many changes (especially the acne) and I seem like I have a different body than I did in December. Also the weight gain. Taxol doesn't make me nauseous, so I still eat normally, but have the fluid retention and can see my thighs and arms getting bigger every week
06Elise- my husband was out of town last week, and I know the feeling...kind of like you're pushed out of the nest to fly on your own. I made it though. I suggest having some freezer meals and quick meal fixes on hand that you can just heat up. Soup was my friend.
Home today resting as I seemed to have overdone it this weekend.
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suzted- so sorry to hear about the loss of hair. But it will grow back;) I hope you didn't have a lot of out of pocket money spent. I asked about it and my mo said they don't promote it. Most of her patients that did it independently spent thousands and some had frostbite that didn't allow regrowth in those areas.
Elise- I'm on AC every 3 weeks without neulasta and this second round still has me dizzy and exhausted 7 days out... Dose dense must be rough. But stay positive!! I know it's hard but it will be over and done with!
Asher- I've been out in town once without the wig, but I had a buzz going and everyone thought I looked "bad ass". Now that the buzz is falling out, I'm now becoming a bit shy of heading out completely bald. I went out yesterday with a pretty cool cap... It's super soft and has two long tails that you wrap around twice to make a head band and tie in back. Gives some oomf and volume. And I wrapped the first go around flat, then twisted the second go around. I though it was adorable! But... My husband and I decided to go to the outlets in NH and EVERYONE was staring. Never mind I'm tired n dizzy and physically showed signs of it... But older kids looking at their moms telling them to look at me. And how about this...? I'm in jcrew, dizzy n a touch of vertigo creeped up. I'm just kinda in a fog but wanted to try n have a normal day. I'm walking slowly to go check out a rack of shirts and this woman stops to let me go. I guess I was too slow for her n she decides to cut me off and walk right in front of me while shaking her head!!! A woman! My husband looked at me and I said loudly to him "did you just see what that bitch did?" The girls behind the counter loved it!
Chambo- please go get that retracted nipple checked ASAP. Is that the site of your lx? You should have all swelling gone by now.
Piper- have you seen American Horror Story Hotel with Lady Gaga? There's a character who's a transvestite named "Liz Taylor" and he's wonderful! But I feel like him when I look in the mirror with a cap on and putting on make up lol!! That's why I hate the caps, but not there yet to Rock the completely shaven bald head yet. My wig hurts my sensitive scalp but I wear it. Sometimes when I'm putting on make up, it feels like a joke. My eyelashes are so sparse, eyebrows thinning and my skin needs to be super moisturizer with night cream during the day. My favorite lip sticks and glosses now look so different on me. Grrrrrrr
I think I might try a spray tan. My mo's nurse practitioner said if it's organic, it's ok. Maybe some color on this white, pasty, tired body might do some good:)
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Can I just say how much I love you ladies and how appreciative I am of this safe space that BCO has created for us to connect. I love reading your posts and getting to know you all through the bad and the worse of this stupid disease. Being able to go through all of the pain, anxiety, SEs, worry and everything else, along with getting a glimpse of your beautiful faces and families makes my day. Knowing it's ok to feel bad, say it and move on is a gift. We'll get through this, even if sometimes it seems questionable at best. We will.
So thanks.
BTW, YES! We stopped at Rite-Aid on the way home from the SO and while waiting in line with my Vagisil and Jelly Bellies, a woman a couple people back leaned forward and alarmingly asked if I was OK? I said I was fine but she didn't believe me and decided she needed to make it an issue by continuing to lean around people to look at me?! WTF? I went to the register as she went to hers and it felt like was a sideshow attraction to gawk at. I wasn't wearing anything on my head. Sheesh....
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Myra- you should have said "thanks for asking. This itch is really annoying." While holding up the Vagisil;)
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MLP3 - so now I will call you Liz. The beautiful one! ( you know what I mean)
Myra. Back at you with all the love!
My New Orleans lady Nola take it easy
💕
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MLP3 you just made me laugh out loud about the vagisil.
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Hi Ladies - I have been off the grid since this last treatment - boy it was a rough one. I do love catching up though. I have to be honest., this has tested me to want to give up and not continue these treatments. not being able to eat or drink, with out sever abdominal pains and the doctors not being able to fix the issue. This week is suppose to be the week I feel good get I am still so fatigued. This is also really causing so much change in my eyesight. Even with my contacts I have a hard time seeing clearly. What else can go wrong.
Myra - you are a Hoot! - I was briefly out this weekend with my girls and I get the eyes like "OMG - what is wrong with her"
Piper & Chambo - thoughts with the both of you ~ you are already under enough stress as it is. Get it checked out.
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Thank you all for sharing your stories. I totally love how you all tell it like it is. I agree with MLP3!
I'm sorry that woman was so rude, MLP3. SMH! I'm so glad I'm not the only one experiencing the crazy! I was in a rather short line at Target and some people came up behind me, took one look and went to a LONGER line! WTF? My husband said that we should wear it like a badge of honor. Really it is, but I haven't gotten there yet. Frances- I'm sorry you're having such a hard go at it. We're here for you! Please don't give up. When you need to vent come and join us.
Piper- I hear you! Sometimes I look in the mirror and, although this has all been going on for about a month, I feel like I've aged! I see the baldness and the port in my chest and I'm like, "Who is this woman?" I agree that regardless of age, we should all walk away from this survivors. Sometimes I get discouraged, especially after hearing I was BRCA1. Wow! I could be dealing with this for the rest of my life.
Chambo- I'm glad you're feeling better! Sending "keep away" thoughts to the itch on your hands. I hope your appointment goes well & those doctors listen to your concerns.
Elise- ((hugs)) I hope you are able to work out a system for when dh is gone.
Myra- you rock! I wish I was brave enough to go out without a cover. I feel weird even walking the dog without one! I'm such a chicken.
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Lol Piper!
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Hello All
I am so enjoying hearing all your stories and jokes today. I am patiently waiting for #2 infusion this Thursday. The hair is very spotty and every time I run my hands over my head hair falls out
. I normally wear my hair in braids and Im very excited that my braid wig came n the mail today. Im sending you all well wishes for this week.
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Imani, you look beautiful! We're on the same treatment schedule. Reflect is also on our treatment schedule. Do you get yours every 3 weeks?
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when you see Liz it's not someone new! I'm talking to you. ( if I see a Liz I will change that)
Jsyk, I have been called Bridget or Bridge by people due to my Bridget Jones look a like ways before. That and my sense of humour. Now, I have two blue stretch marks on my left smiling upper jowle part.
Hi beauty imani.
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