September 2013 Chemo Group
Comments
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Thanks for support, I still feel awful, body aching all different areas and constant headache, I did feel a little better after I ate dinner, seems to be making me dizzy if I don't eat too...so blood sugar? I will check anemia and all again on Wednesday...or sooner if I don't feel better by Monday. This just scares me to feel SO bad...I do not think I'm going to get the nuelasta again...unless it goes below a 2 then maybe neupogen, but that made you feel awful too? I thought the Claritin was giving me rapid heartbeat so didn't take that last night and had super rapid again this am...must just be the neulasta...
The Advil isn't touching the pain, so I am taking the hydrocodone tonight...I need some sleep...
Yes, my daughter is in everything...thank God for my husband, he went to pep rally and he is taking her to a party now ...and picking her up later...so yes, there will be more events I know - Just being a baby today and having a sad/bad day...
I agree with the empathy and them knowing they are not priority 1 always...so thank you!
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You are not being a baby; your body is being poisoned in order to fight this beast, and that poison makes you feel like crap. One of the nurses I had while in the hospital took one look at me and said it was not surprising I ended up there...because i am tall and thin. Because the chemo dosage is based on height and weight, people who are thin tend to be "overdosed"...she called it her observation and not a proven medical fact. I believe you said you are thin. They may need to adjust your dosage. If I had done 6, they likely would have adjusted mine for the last 2. I hope you can find some soups and other fluids to fill up on to continue to flush those toxins out. -
Audra,
It does take longer to rebound each time and I felt significantly worse with rounds 4 and 5. I have been trying to work as much as I can. In the first three rounds, I only had to take part of the next week off to recuperate. In rounds 4 and 5, I was out for the entire next week. I expect I'll be out all week for the last round (next Friday) too.
You can do it. Just don't try and over-do it. Glad you have your husband to cover the bases with your child's activities and be sure to have him text you pictures or video. With technology, he might even be able to 'facetime' it and then you are virtually there. ;-)
Hang in there.
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yes chemo is based on body SURFACE area of all things. I thought that was really weird, and not based on weight.
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Audra I hope you feel better, I understand we always want to be there for our kids, they understand though. Hugs
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Thanks you all, yes I am 5 foot 1 and 115 ish...on a good day...so I wonder what they are dosing me with?? Interesting. I did call about side effects and the nurse just says they are normal...told me to take hydrocodone or advil...well got severe headache with advil or just combination so I'm scared to try hydrocodone...I am using Ativan to sleep every night, I think I am just a control freak and used to going all day long every day and working out and all and now nothing...it is just depressing.
I appreciate so much your kind words and thoughts and encouragement! It is wonderful!
I am wondering if going to get a period again as I have been over emotional all day and just bit my sweet husbands head off and told him he didn't care about me, then proceeded to walk around the house in a huff until I was exhausted (not too long) so now back to the couch...sigh..
thank you all!
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Hello All,
Thank you for all your support through this difficult time. I completed my 12th Taxol on Wednesday and now am dealing with all the usual side effects. I will have surgery in mid January and so am heading over to the January surgery group. I received the news that the ACT with taxol weekly x 12 effectively RESOLVED all known areas of concern. I am still going forward with surgery and will gladly join the flat and fabulous group. Be strong; you can do this. I worked throughout which was tough but doable. I hope that all of you will get through this difficult time and love long happy and healthy lives. I'll drop by just not as often. Bye, V -
Great news HVV! All the best...
Audra, hang in there... ask to speak to the MO if you are not happy with the nurses...sometimes they just seem to brush off SEs.... -
Morning Ladies. Thought I would drop by & give all an update. I'm 4 weeks post chemo now. Still have the tight burning legs. Facial neuropathy is slowly getting better. Taste buds are starting to work, but tongue still feels a bit burnt. I do have to watch what I eat. Spicy foods will upset my stomach. The sore feet that I had has turned into extremely dry cracked skin. My eyes still weep but not nearly as bad as it was. My hair is growing but it is still white/clear. Overall I do feel better & have more energy. If my legs felt better I would be doing a lot more than I am. Big hugs to all. -
70Charger,
Great news! Hope for the rest of us following you. :-)
Questions for anyone who knows... When they do radiation, do they do a different spot every time or do they radiate the whole target area every time? Also, would there be a problem getting two doses a day in the last week (one in the morning and one in the late afternoon)? My 7 weeks of radiation will be butting up against a much needed vacation at the end of March that is already in the 'bought tickets and made plans' stage.
Also was wondering how soon after surgery you can really start radiation? Doc said 4 weeks. I'd like to start 2-3 weeks post-op, then I wouldn't infringe on my vacation plans. Yes, this vacation is really important to me. ;-o
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Chemotherapy dosing by body surface area (BSA) is calculated by height and weight and computed into square meters. That is one of the reasons you are weighed each time before you receive chemo.
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I just thought I would check in. After 12 weeks of taxol, and my first AC infusion almost two weeks ago, I think I'm about to lose what is left of my hair. My scalp and eyebrows have been hurting for the last two days. Yesterday I played around with my wig and makeup. I felt so much better after sprucing myself up a bit. Here's a "before" picture of me yesterday from the side to show how little hair I've got left.
My scalp really shows through all over. Even neatly arranged, it looks very ratty and grey. I stopped coloring my hair when I got diagnosed. I feel like I've aged in appearance at least 10 years since I was diagnosed. I'm more than ready for what's left of it to be gone, but my husband is out of town and he asked me to wait until he gets back tomorrow night.
Here's a picture after I spruced myself up with my wig and makeup. Although the wig is not exactly like I used to wear my hair, it's very close. I feel like l look so much more like me in the second picture. Big difference between the two pics!
I don't know if I'll be able to tolerate wearing the wig very much, but one thing I know for sure. Even with a scarf or hat on, I'm going to be a lot more likely to put on makeup and create some eyebrows if I need too. I just look too old and wierd without them. I know a lot of you have been dealing with being bald since Sept., but up until the start of AC eleven days ago, I still had enough hair just look like a lady with thin, fine hair. I've known this was coming for a long, long time, but it's still freaking me out a bit. Grrrr... -
simplelife
you spruce up quite nicely LOL !!!!
I am amazed you still have as much hair as you do! I did A&C first, now Taxol so maybe that is the difference why my hair went so early on? -
simplelife - I HATE not having eyebrows!!! Almost as much as not having hair. I have a few scraggly brow hairs - enough to show me where to draw in, but it still looks awful. I'm done with chemo now, though, so maybe they will start growing back. You look fantastic all spruced up!! I really still can't stand wearing my wig. I just feel like EVERYONE is looking at me and knows it's a wig. Whenever I'm home or just around friends I stick with a hat, but if I have to go to work or an appointment I break out the wig.
So today I had the mother of all pity parties. Holy cow. I don't know if it's the post-chemo blues or if I've just overdone it lately or maybe the added stress of getting everything done for Christmas? I was just sitting here on the couch reading and I started crying my fool head off. Nothing happened to set me off, I was just completely overwhelmed with my emotions all at once. Ugh ugh ugh. I wonder if maybe my subconscious is starting to freak out about my upcoming surgery? -
Michelle (LHL) I feel ya, I had the SAME thing happen yesterday. Just total emotional meltdown. My husband and I got in a tiff and he got really mad at me and I just fell apart on our way back home from the oncology appointment. He apologized profusely but I seriously couldn't "right" myself for the rest of the day. So dang hopeless and sad, can't stand to look at myself in the mirror with no eyebrows and no eyelashes.... tired of not being able to sleep, tired of not being able to workout the way I want to, tired of being bald and having to wear hats, the second I put a scarf on I look like an insta-cancer patient. Tired of having my body just HIJACKED away from me. My body doesn't even work right anymore. Have to take drugs for this, drugs for that. Drugs to combat what the other drug makes worse. I feel like I've been living in an absolute fog since this whole thing began. I can't even comprehend that it has been almost 6 months since my diagnosis. And then today I feel completely different. Hopeful, making plans for January, trying to put together a to-do list of things for when I feel better. I think sometimes we just need to wallow ...and then it sling shots us into a better mood. Hope you feel better soon! A new day is coming !!!
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Simplelife, wow!!! You look awesome! I have enough brow hairs that I have something to follow to color in...when those leave, I have no idea what I will do...I can barely get them looking decent playing connect the dots now. j am not artistic, and am terrible with make-up in general.
70 charger, Glad you are feeling better.
HVV, Great news. I hope the surgery goes well.
LHL, I wear my wig when at work, store, appointments, etc, but nothing or hats at home also. My wig needs to be replaced soon. I think it may be starting to fray a little. I think since we know it is a wig, we assume everyone else knows, but the reality is that most people probably have no idea. I'm sorry it is such an emotional day. There is so much to deal with this time of the year without cancer, but throw on the cancer, chemo, surgery, hormones going 87 different directions, and it is a recipe for tears. I have done ok lately...until I hear the song on the radio about the Christmas shoes. Then I literally have to pull over if I am driving because I bawl so hard.
I was very, very anal all through chemo with hand sanitizer, bleach wipes, etc, and stayed very healthy. Once I finished and got through my rotten first week (and the frustration with MO), I kind of went into rebel mode: "I am sick of all of this" mode...which meant I was not nearly as careful about hand sanitizer, and did not take my normal supplements and such. I think I am paying for it now. I am definitely fighting a cold. DD has had one and has been crawling into bed for snuggles, which has not helped. I spent the day at a swim meet and am wiped. DH is at work, and I very well may be in bed by 7:00 tonight...if I make it that long! Hoping a good night sleep will kick it. -
Peacock girl, I like your idea of a to-do list for when this is done. I know mine should consist of things like scrubbing floors, but I think I may fill it with things that are more fun...and for me. -
http://www.utrend.tv/v/one-second/ Had to share, cried. So beautiful. -
Thanks for sympathizing with me ladies. I knew you all would get it. and Peacockgirl - everything you said is EXACTLY RIGHT! The baldness, the brows & lashes, the drugs, the exhaustion but not being able to sleep...... it all adds up and I think I finally just hit the wall. Unfortunately for my dh, he got home from 8 hours of driving right at the tail end of my meltdown. He didn't know what he was walking in to. LOL
Kbeee - How long do you think we should keep taking supplements? I was taking l-glutamine for neuropathy but I never had any, so I'm stopping that. I also take L-Lysine because I was getting mouth sores. I'm assuming I can stop that. My MO had me taking prenatal vitamins for my anemia... wonder if I should keep taking them until my surgery? I think I might get a new wig, too. Maybe that will help me feel a little more perky. -
I was taking B6 and B12, lGlutamine, Vitamin D, calcium, and something called Epicor (which I have taken for a few years), because I used to get pneumonia a lot. I stopped taking them all a little over a week ago except the calcium. I did not make a conscious decision to stop them. My S, M, T, W, T, F, S dispenser was empty at the end of the week, and I just got sick of all of the meds and such and never filled it. the only reason I amstill taking the calcium is that they are chewy, they taste good, and they are in a different spot than the others...pathetic, eh???? I have been taking my Tamoxifen, so I have not been a total rebel. Since tomorrow is Sunday, maybe I will reload it up. I think I will take calcium, vitamin D, Epicor, and Tamoxifen. I may take the B vitamins too...if i take L glutamine, I will begin decreasing the dose. I wish there was guidance on this sort of thing. I do not have neuropathy too bad...just a little, but maybe taking the B vitamins will hasten it's disappearance. -
I'm with you all, I'm sick of taking so many pills to make my body to what it did normally by itself before all this crap. I really need one of those day organizers! As my fatigue increases, so does my desire to fix myself up and look nice. Less wigs, less make-up, just can't make myself care. Simplelife, you clean up nicely! The wig looks great. I've had many people tell me that if they didn't know my wig was a wig, they wouldn't know, but I still feel like an imposter. I've been trying to have something to do at least every other day that requires leaving the house - looking nice. Maybe at the least, it forces me to shower?! My husband has been out of town since Wed, returns tomorrow, house is a disaster, I'm exhausted. He's probably coming home to a train wreck he isn't expecting too - I should warn him!
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70 charger, thanks for the update. I miss eating what i normally eat so it looks like I should refrain for longer.
Ladies, I hear you all, thanks for sharing. It is good to vent because that is how we all feel. Stupid, stupid cancer... -
Sorry, my computer was down. I hope you all feel better now. I dislike the wigs, so I have not worn any, although when I go back to work I may have to wear it. It's hard trying to get a new normal in our lives and bodies. I hate I can't sleep on my belly, so I toss and turn all night. Hugs to You all.
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I feel exactly the same way about all the pills and collection of prescriptions I take on a daily basis now. I didn't take any pills on a daily basis before being diagnosed. I have to use one of those pill organizers and write down what time I take my antiemetics etc, or there is no way I could keep track of it all.
I also had a a meltdown last night. My husband has been gone since Thursday and I've been in the the house by myself. I know what triggers most of my meltdowns....it's when I start looking at survival information on triple negative breast cancer or looking at treatment options. TNBC ALWAYS gets described in articles as an agressive form of BC with no targeted therapies and poor prognosis. I hate that! I think they do it for the shock value. The truth is, most women with TNBC survive! When I first started trying to research TNBC, those words would scare the cr@p out of me! Now I try to ignore that part of any article on TNBC, but it doesn't always work.
All the news that has been coming out over the last couple days from the Breast Cancer symposium in San Antonio this weekend has just made me depressed. I feel like even if they come up with something, it will be too late to help me. I finally had to force myself to turn off the computer, take an Ativan, and watch episodes of Glee on Netflix! I had to get away from cancer!
70charger, thanks for posting the link about "just one second." It's so true....what a relief it is whenever "for just one second" I can forget about stupid cancer! It rarely, rarely happens, but when I do forget just for a second, it feels so good. I think it happens most for me when my husband and I are at our weekly ballroom dance class. We both have two left feet, but I think the music and the movement and just trying to learn how to do the cha-cha etc, ocassionally take my mind off of it "for just one second." I always walk out of that class feeling far better than when I walk in.
We all need something to take us away....for just one second! -
Peacock: I do actually have a gofundme account, but it hasn't made much of any money. You have to make $100 in online donations before they will make it public, and it hasn't made that.
Knightzoo: I will check out the hopemob. Maybe you don't have to raise a set amount before they will share it. Thanks!
Audra: are you getting pre-chemo steroids and anti-nausea meds? Mine gave me a HORRIBLE headache for 4-5 days. The kind of headache that makes you sick to your stomach, and yes, it did remind me of low blood sugar feeling. The PA suggested that I ask them to run it really slow and ever since I did, I have no more headaches.
70scharger: Glad to hear that you are doing better, and that the leg issue is still persisting. I know that I am going to be dealing with that as well.
KJ: I *think* they do the same set of radiation every time? That is what I gathered from it, but I am not 100% on that. My RO said that they would radiate from one side and then rotate and do the other. So, both breasts and armpit area each time. I have no idea about doing two in one day and my RO said 4-8 weeks post surgery for starting so no sooner than 4
I hope it doesn't mess up your vacay!
Simplelife: You look AMAZING!!! I am so bloated and swollen up that I look terrible lol.
LHL: I know I keep promoting the SmartBrow thing...and I promise I am not getting paid by them lol, but it really does work well. I even took a pic of myself with one done and the other not lol. I keep forgetting to post it. I will though. I am worried about the post-chemo blues. I have heard about that and I am thinking that I am going to be a total mess. I am mostly just worried about my ability to take care of myself enough to stay healthy enough to keep this cancer from coming back. I am definitely not good at taking care of myself.
I am terrible about taking my pills. I don't have a pill dispenser big enough, is part of the problem. My friend gave me some Colostrum and Cordyceps to take (look the cordyceps up, there's a video...very weird and crazy!!) but I haven't taken in enough to know if it works. Oh, and that friend...she had stage 4 ovarian cancer and decided to quit chemo after round 3 (she was on the same regimen as me). She just went and had blood work done and her cancer marker levels are in the normal range! They were still elevated when she quit chemo. She has been doing juicing. I need to do what she is doing but I can't afford 5 pounds of carrots PER DAY!
I am so excited to start my steroids. I know, I'm crazy and they only one who likes taking them. I am sooooo unbelievable wiped out it is not even funny. As a chemo patient, I thought I knew tired, but this is a whole new level even from what I have experienced. My muscle pain is back full force too, and the steroids are the only thing that takes that pain away. At least now I know exactly when it starts- 2-1/2 weeks post-chemo, so I will just ask for a script to start at that time..unless that will interfere with my surgery on the 15th. I've been crazy busy lately. We were supposed to go see Santa today but I didnt' get it done. I dont' want to deal with the huge crowd that is there. I feel bad, but I think we will have to wait until next year. My kids have never gone to see him and my middle will be 6 next year. UGH, maybe I can take the little two Thursday morning-day after chemo- it is literally the only time I will be able to do it. I went and bought about 3+ weeks of groceries this week and I am going to put them all together as meals and freeze them so I just have to throw them in the crockpot. I am insane. I surely don't have the energy for that. Who knows how I am going to feel after this last round though, and with Christmas rapidly approaching... I am going to go put the coffee on now... -
We went and got pictures done
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Ok, time for all of us to get out of our funks and enjoy the Holidays!
Challenging all of you to post a current pic. Here's mine... taken yesterday while out being Santa's helper...
This was me about 6 weeks before finding out I have cancer (July or so). I'd decided to cut my hair very short for the fun of it. My youngest had just graduated from high school and I waited to cut it until after graduation so I wouldn't embarrass him. Can't wait to get that much hair back...
For some reason I take most of my selifies in the car.
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Great pic and a beautiful family, MamaStewart!
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Mamastewart - LOVE the picture! :-)
KJ - I'm with you, I can't wait to have hair, even if it's short, short, short! I'll post a pic later. We are getting ready to leave for a bit.
Figured out part of my big funk yesterday - I hadn't been taking my Lexapro!!! I know I missed at least two days of it, maybe more. Yikes. Oh well, at least I know it works! LOL -
Here is the SmartBrow product I have been raving about. Takes some practice but even up close it looks realistic. Maybe not making out close, but almost.
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