Anyone starting chemo August 2016?
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Kelly ....What the heck....you have had your share of crap. Glad you avoided an ER visit this time.
Kechla....love the cute hair style ....can't wait for enough hair for a style or a spike!!
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Poop, Kelly! Knowing of your concerns, I'll bet the doctor was extra careful about keeping the area meticulously sterile. I'm sorry that you've had so many challenges.
Lyn
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Hi everyone! I am more than halfway through radiation. Ready for it to be over. The machine is dying, and they are moving to a new location with a brand new machine next month, so they keep limping it along. They have cancelled one treatment and the machine has died with me on the table twice.
I love seeing everyone's hair growing back and hearing hair stories. My hair is finally really growing back and I want to color the grey, too, in a couple of weeks.
Kelly - I hope the drains offered some relief!
Dara - the baby has more hair than me, too! Lol!
xoxo
Annie
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Annie....yay for half way! Hope the machine survives till your done
I can't wait to have enough hair to color it because I've never had such dark hair. Happy to have any hair tho
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Hi Everyone-
Still dealing with this infection. I feel like I'm moving better and less swollen now that I'm 5 weeks out of BMX w/TE's. I saw the surgeon again, she opened up a couple of spots on the wound and drained more (gross), sending that off to pathology. Last path came back clean, but she said it can grow in a week's time. I'm now on 2 antibiotics and she's putting in a referral for an infectious disease Dr. So far (fingers crossed)- chest looks ok, but having these TE's just makes it more of a concern. No fever or anything, but I couldn't be a nurse with the oozing haha.
Hope you're all well...heating up in Calif for a bit.
Oh- since I'm unable to do much, I finally read a book haha. Girl on the Train. I know it's a movie, etc now, but was able to borrow it onto my kindle....enjoyed.
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The mechanical issues must be frustrating, Annie. A gal wants this stuff DONE!
Ajbclan, blasted infection cooties! I didn't make progress with oral antibiotics with my seroma related infection so was glad that the specialist could offer me a PICC line and setup that let me do daily IV antibiotics at home. I'm glad that you were at least able to put your unplanned downtime to good use with a mystery novel.
Lyn
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Well Kelly you just can't catch a break. Hope the pathology reports come back clean.
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Hope all are doing OK. Kelly, hope your infection is showing improvement.
Busy week this week. I'm going to the studio as much as possible, but also several dr appointments and getting together with friends. Saw my oncologist on Tuesday who changed my AI again (this is the last one available to try.) My co-pay on the extremestane was $380, and when I went to get the letrozole yesterday my co-pay was $1! Something is really wrong with our system!
Today is dermatologist and then lunch with friends in honor of my sister's birthday which would have been today. I think my deem will not be happy as my psoriasis has really flared. The MO was laughing when he saw it and said I bet you want to go back on chemo :-) (NOT!)
Anyway, have a good Thursday. Weather is really warming up here and it looks like a gorgeous day already!
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Hi Ladies- thanks for the well wishes.....still nothing on the pathology (2nd one), so she's thinking it's skin only. I have referral for infectious disease but for some reason that dr's office isn't getting a copy. After they receive it, still takes 2 weeks to get in. LOL. The BS and I thought the redness looked better yesterday so maybe I won't have to go (fingers crossed).
Dara- that's crazy with the co-pays! Are you getting any SE's??
So I started reading this article and I thought of all of you- as we continue down our path to wellness, good reminder that we may not just jump back on our feet!
http://www.lbbc.org/sites/default/files/LBBCUnderstandingInsomniaFatigue.pdf
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Ajbclan, I had a difficult time finding an infectious disease doctor accepting new patients. I felt very lucky that the specialist I ultimately consulted was very nice and even had a second office that was closer to home than the major hospital where I first saw her. Keep us posted and hang in there!
Dara, OUCH on that big co-pay!
Lyn
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That's a good article, Kelly. I find fatigue is the hardest part of life after bc. I spoke to my MO last week when I saw him. He laughed and said my expectations are unreasonable. I get to a point around 6 pm when I just hit a wall. by 9 I have to stretch out in bed. They said it's not unusual for it to take a year and that some of their patients hit the wall around noon! I guess I should count my blessings.
So I'll vent just a tiny bit. .. Since recovering from bc I REALLY HATE to cook. I think by night time I'm just too tired to plan and cook dinner, but I really don't feel like cooking at any other time of day. Anyone else feel like that? I'm trying to tackle projects like cleaning out closets, but find I have to sit periodically. My back, hips, and knees get really sore. I'm not sure if it's the new AI (now on generic femara) or if it's psoriatic arthritis. My dermatologist is fighting the insurance company to pay for a drug I used to take, Otezla, that was like a miracle drug for the psoriasis and arthritis. The drug costs over $2700 per month, and I can't afford that! He's making the claim that now that I've had bc, it's the only drug I'm allowed to take, the others suppress the immune system. Keep your fingers crossed!
Kelly, hope you can get in to the infectious disease specialist soon. It may be nothing but it's nice to get that confirmation from the doctor.
I'm just having so much fun with my pottery! I can go to the studio 6 days a week and find I can just forget about everything there! I'm experimenting with throwing a piece, then carving it before glazing. This is my latest piece before I glazed it. I'll let you know how it turns out when glazed!
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Love the pot, Dara. :-)
Lyn
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that pot is so cool!! Love it, and that you have so much fun doing the wheel work. I would love to get into some hobbies and maybe back to work part-time. I really have been sitting on my arse now for months. I was able to do more during chemo! The surgeon said I could walk, but no power walk, hikes, getting my heart rate up. The pharmacy commented today when I went to get more pills about haven't I been on these for 3 weeks. Yep.
Dara- my husband (who's been doing 99% of the cooking) just asked me what are we doing for dinner. LOL. My response- I'll eat a pb & j, I don't need a "meal". haha.
I'll be curious your thoughts on the pain etc and if it is the hormone therapy. I still haven't started Tamoxifen yet because of my current issues.
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Love the pot, Dara! I hear you on cooking. Dinner has been a huge struggle for us. Fingers crossed your doctors suggestion is taken by the insurance!
I hope things are looking up, Kelly!
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Dara ....what a nice piece of work. I hear you on the cooking. I work all day and I'm too darn tired to organize and cook dinner ...then I got the crappy dishes and kitchen to clean...its just exhausting. I'm so tired of being tired. I do prepare meals but want to kick myself sometimes when I'm in the middle of the mess. My back, shoulder and neck have been so achy and sore too.
Kelly ...hope you get into the specialist soon.
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Cali, with me, it's my back, hip and knee that are really giving me problems. I'm lucky though in that my husband takes care of all the dishes and most of the cleanup. I think I"m going to check in with my orthopedist to see if there's anything he can recommend. I'm not letting it stop me from doing what I want (pottery :-) ) but I really pay for it later in the day. I too am tired of being tired and being sore. I figure we've paid our dues and deserve a break now!
BTW, I was brave and posted a pic of my hair (or lack there of...) I still won't go out without a wig, but at least it's beginning to fill in a little more. How are all of you all doing in the hair dept?
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Dara you have a ton of hair!! I have way less, but I go out without anything (esp with our warm weather). I just don't care anymore. It doesn't bother me, if it bothers others well this is what chemo does when it's trying to kill cancer. I think people just want to NOT think about all the steps and crap we go through to fight this (Cali and being tired is part of it!!)....we beat it hopefully and then life is suppose to be normal again....not. So I think once in a while a little realism to put things into perspective is ok. I think most people that don't know me are trying to figure out if this is the style I'm going for lol. I just don't like the specks of grey, but whatever. I wish some could feel what these TE's feel like for a day too (maybe a husband- so they understand the whining lol).
Saw my PS yesterday- the good news is the chest looks good, infection so far is staying away- but still dealing with it. Can't seem to get my referral into that infectious disease office so i can make an appt. See the BS tomorrow. One thing the PS said was that there might be some fluid in the area again. He said if there's fluid then it won't go away. Didn't realize that, ok. Also a nurse asked him about the whole situation. He said it's from the lymph node surgery and the lymphatic system not moving the bacteria and junk out. He said it becomes a "party" in there. LOL....interesting.
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Dara...you do have lots of hair ...I have less and I am making an appointment with my hair girl....who is also a friend diagnosed the same time I was .. But completely different treatment path. Anyhoo I'm getting a bit of color and neaten up.Kelly...
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Vicki, I'd love to see a pic of your new do when you get it done. I'm afraid to go to the hairdresser, but think especially the back should be trimmed up. I guess I'm still just hanging on to any length I can get. The top is still so short and goes every which way. I do want to color it though as I think getting rid of any gray will make it look thicker. How are you doing on your AI? and which one do you take?
Lyn, are you on hormonal therapy? I just wish I knew if my aching joints is due to letrozole or psoriatic arthritis. Well, I'm off to the pottery studio this morning, so hope everything eases up.
Happy St. Paddy's Day! Don't forget your green :-)
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What color are you getting, Caligirl?
Dara, you have way thicker hair on top than I did before chemo! I've been having to do a comb-over for years. No hormone therapy for me. Unfortunately, I'm triple negative so we mostly have the same crappy drugs that were used in the 1980s.
Kelly, what is the deal with the infectious disease referral??? I would be tempted to ask the doctor to handwrite the blasted thing so you can hand deliver it asking the employee receiving it to sign and date acceptance while you record the event on your cell phone. It took multiple calls, but I was able to get in with my surgeon's office stressing a sense of urgency. Regarding the lymphatic stuff, I wonder if seeing a certified Lymphedema therapist for manual drainage might be an option? Done correctly, it's a very gentle technique, kind of feathery vs. significant pressure.
I mostly go nekkid noggin because I hated my wig and I'm not going to be uncomfortable because others don't like being reminded that cancer isn't cured yet and fighting it is an arduous battle. I know others take comfort in looking normal, but I don't have the energy yet to try to recreate my brows or line my puffy eyes to mimic lashes. It's fixin' to be in the 80s here in Texas and scalps want to be free!
Have a good weekend, ladies!
Lyn
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Dara, I'm jealous that your hair is coming back in straight! As you can see, mine is thick and curly. Recently was joking I should dye it red, and I could be Ronald McDonald.
Happy St. Patty's Da
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It looks so thick though, SensitiveHeart! A little more length and you can use a small flat iron if I you choose. :-)
Lyn
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Sensitivehr ....you have lots of hair .... I wish I had as much.
Dara....mine goes every which way too .. With a bit of gray mixed in.
VLH... I will go with my lighter color ..... a blond shade.
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Sensitive, the top of my hair can be straightened with water etc, but is beginning to curl a bit more. The back is very curly. It's maddening because just when I think it's growing, the curl kicks in and it seems to get shorter again!
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Dara ... Forgot to answer your question about Al....I am Triple Negative so none for me. I am so excited to have my little hairs looked at tomorrowsince I am tired of wearing anything on my head.
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Hi Ladies! Love all the hair pics. I need to color mine. I'm still going out with short hair.....
Saw my surgeon today, she thinks things look better--- stopping antibiotics and "seeing" what happens lol. Um...ok. I DID get an appt with the infectious disease dr next week, so I think she feels lets test this out and he can take care of it if it's not gone.
Ladies that did radiation- my good friend's mother just got diagnosed. Sounds early stage, doing a lumpectomy and probably radiation. I guess her skin is super sensitive.....let me know any hints etc you have for her once she undergoes that piece. Thanks!
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You did it, Ajbclan! Were you starting to think this infectious disease doctor was a mythical creature, like Bigfoot or unicorns? :-) Let us know what you find out.
Lyn
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Hi Kelly. I have ultra sensitive skin, fair and freckled, that is compounded by psoriasis. I did just fine right up to the last two weeks. Just tell her to load up every day on the moisturizers they recommend. If she does react, they can prescribe silvadene that helps a lot. And really glad the infection seems to be clearing up. And of course that happens right when you get the infectious disease appt. I think that's why they delay so much!!
Anyway, hope everyone has a great weekend.
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Thanks Dara- I passed along your hints! Appreciate it.
Lyn- I follow the Sept chemo board, but thought it was more appropriate for me to just tell you- yea on your mini walk that was positive! We'll take it, right? Baby steps.
Funny- on the Infectious Dr, someone randomly texted me that she wished I was seeing Dr so and so. I'm like- well I am lol. She saw him before, took her a month. So I guess my less than 2 weeks is good lol.
My kid just played volleyball all day today....we were out of the house at 545, drove an hour....didn't leave there until 5pm! and then had to watch them lose all day....ugh.
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Kelly....I remember those long sports days ...made worse when they are loses. Glad things are looking up. Isn't that how it goes you finally get into the specialist when your better. At least you can go get established with he doctor now.
I got my new do and color I will post the silly selfie I took of me. I am not good at this stuff.
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