March 2011 chemo-lounge
Comments
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mdg - I'm there with 'ya on Wednesday for #2 of 6. I'm crossing my fingers that it's a different experience this time. I don't want a week's worth of saline IVs to counter the big D. I'm going to go to the clinic for my Neulasta but I want to have the nurse simply watch me do it so that I can learn t do it myself. It will save me a 30min trip each way.
supersally - I was told by the nutritionist at the cancer centre that the odd drink of alcohol is fine. They don't recommend it the day before or day of chemo, as well as the days of SEs after chemo. Makes sense; no point adding even more to the chemical soup. I haven't had anything since I started but won't rule out a nice glass of wine on a really good day.
I'm also itchy and wishing I could lose the stubble. I went in to pick up my new hair today and the manager wanted to see what my son had done in case she needed to fix it. Turns out he did a fine job. She said not to take it any shorter because there's a risk of ingrown hairs. I have to go back for my complementary scalp massage and moisturizing treatment. Maybe that will help with the itch.
Kymn - My DH is trying so hard. He has a demanding job and he wants to give his absolute best. But he's feeling like he's only half at work because he's worrying about me. I know it's stressing him out and I'm trying to give him a bit of space to work or go running with his buddies. My problem is more with the teen boys who still aren't ready to take more responsibility to compensate for what I just can't do. They don't mean to be selfish; I don't think they really understood what was going to happen until they saw me after chemo #1.
As if chemo and SE's weren't enough to deal with, I had to have a bonus colonoscopy today, just to be sure there's nothing odd going on in there. The prep was horrific. I couldn't even finish the stuff I had to drink because I started tossing everything except water and watered-down gatorade. I had a killer headache yesterday that prevented me from sleeping all night. But it's now done and there's nothing of interest. The headache is finally gone and I can eat again. I want to enjoy tomorrow and psych myself up for Wed. No nausea. No big D. A couple of days of being tired and off my feed will do it this time.0 -
About the stubble thing-I had my shaved today. I cut it really short with the scissors last night-and managed to cut myself in 3 places-after that I didn't dare to try to razor it myslef. She cut it at the lowest level she could with the guard still on the razor so I have a 5 o'clock shadow.
Will it go shiny bald by itself? It really isn't as bad as I thought. I have a lovely large round melon head with no dents or bumps. I just really wish I had been more proactive about ordering headwear. Hoping it starts showing up by tomorrow.
One thing I know for certain if you have no hair you really need some makeup. I really haven't bothered with much of that for years for everyday but think I will get back on it. I have an appointment at an Aveda training school for a facial and makeup application. Figure if I am going to do it better use the natural stuff.
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Good evening my fellow lounge lizards. I am getting mentally prepared for this weeks cocktail on Wed. I worked out extra long today because in the days following chemo all I do is eat, eat, eat! I have had an appetite in the days following chemo that could challenge a teenage boy! So I did an hour on the elliptical (my doc would not approve that I am sure) and my usual weights/physical therapy. Tomorrow I have my last TE fill! Yippy! My boobs are too big now but they must overfill them so by tomorrow I will be up to 520 cc's - Yikes! Right now I feel like I bump into everything with them (I use to be an A+ before surgery and am at 470cc's now which must be a large C). I also finish my physical therapy this week as long as I have no issues from my fill. That will be two less appointments each week I have to go to. The night sweats have now started turning into day sweats too. Not fun! Last night I woke up several times sweating like crazy. I wake up my poor hubby each time as I am thrashing around trying to cool off.....no one is getting good sleep. The worst part is these will probably never end as I start tamoxifen after chemo. Is anyone else having night sweats? Did your doc give you any solutions? Mine said if it gets worse we can try some type of antidepressants because they can help with night sweats too....hey that could also help with the mental status which would not be a bad thing either......we will see. Just curious if anyone has tried anything more natural to help with night sweats.
Adangel: Are you doing cold caps too? I thought I was the only one....let me know. Is your mom really going to make you rent a larger place? I can't imagine moving in the middle of this....I hope you are not serious....
Kymn: sorry you are feeling down about your DH. Men just have such an different mindset. It's like they really have no idea what women really need. I get the same way at times about my DH. I get mad when I have a ton to do the night before chemo (cooking dinner for a few nights, getting my little one a bath and to bed, getting things ready for the next day, etc....) and he goes out to play vollyball. I know he does that every Tuesday but sometimes I just get a little bummed that it never crosses his mind to not go one time because of all of this going on. Then sometimes I feel like I want him to keep doing his Tuesday night vollyball and Sunday morning basketball because I want him to stay active and be healthy and have a stress release too. I do get disappointed at times because life does seem "normal" for him....all I can say is BC is very lonely because I am the only one that really has to live it.
Supersally: are you feeling better??? Hope so!
Cathyjoan: Are you getting back to normal now? I hope you are feeling better!
Jules: Good luck with this round. So nice you got to ride and enjoy a great weekend before the cocktail. Hoping no SE's for you this round!
Penny: I too get use to my mom's comments although they do annoy me at times. She's not going to change...so I have accepted that. I just find I have a little less patience with it since getting diagnosed. Knock out #3 this week girl! You will be half way there and that's good news! What's hard about the "men" thing is that we have certain expectations and they just have NO idea and if they don't do what we want/need, we are disappointed. The hard part is that we keep hoping somehow they will "get it" this time and they don't and then we are disappointed again. It's an endless cycle.......they mean well at times and just when you give up hope, they do something sweet. They are just "men".....
Christine: You are in the home stretch....only 1 more to go. That is fabulous. I hope you feel 100% better tomorrow!
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Girls, Have been away from computer all weekend while my niece was here to stay with me. All is well, just behind on everything. Had a great weekend but reality is crashing in hard again.
Husband is shaving my head in about 10 minutes and I am struggling with that. Threw out every hair product I had in the house and made him take it to the trash can outside. Will be okay once its over but god I had this canser sh*t.
I'll have chemo #3 on Friday, so lots of us together again in the chair. All 3 of mine have been holidays: St. Patricks Day, April Fools Day, and now (what is usually) Tax Day! My charm this week will be the money bag with a dollar sign on it. Couldn't resist.
Hope we all feel better soon. I need to get back active here again. I feel better when I read all the posts and realize I'm not alone.
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lilylady - it does continue to shed after you buzz it until it's all gone. Whoever first mentioned the lint roller, I thank you. It would never have occurred to me, but it does help. I consistently roll off a pile of hair bitties. Part of my itchiness is due to the bit ties falling into my clothes.
I'm also amazed to see that my head isn't as weird as I thought. I have never been able to wear hats because women's hats are generally too small. They sit up on the top of my head and look ridiculous. But I guess my head is just a bit large and the amount of hair I usually have just adds to the size.
I agree that make-up seems more necessary once the hair is gone. I went to my parents on Sun and really didn't need to go to any effort. But it seemed that a little colour on my face made me feel less "sick" looking. I'm pale to start with.
mdg - I'm heading to the gym today too. I'll do some cardio before my session with the trainer. I've "trained" my trainer on what life could be like during chemo and she has set up 3 programs to cover bad days, ok days and good days. I do strength training with her twice a week and do my own thing other days. Today will be my first trip to the gym sans hair. This gym has a lot of the young, lithe, hardbodies and I fear I will stand out. I keep telling people, "I'M NOT SICK!!" Going to the gym as usual is one way I prove it.
Huskerkkc - I didn't throw everything out, but I packed it all up--brushes, hair tools, products--into a box and stashed it in the back of the closet. The bathroom looks so tidy without it!0 -
Re: night sweats. At 52, the chemo started me right into menopause. My hot flashes are not horrific, but they are continuous throughout the day and night. I've always worn a shirt and jacket or hoodie thru the cooler months, now I find myself taking the jacket on and off (or my robe if in jammies) throughout the day.
One thing that helped a lot with hot flashes while I sleep: I turn the ceiling fan on low. It's made a world of difference. The steady flow of air moving in the bedroom makes me sleep better; I don't throw off the covers and my sleeping cap nearly as often with the fan on. Yes, the furnace may be on low, and I sometimes have my electric blanket on low, but I keep the ceiling fan humming.
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Girls, I got the cutest box of hats today. I ordered them from a company called Sparkling Earth. They are 100% cotton, have a little sweatband in the front and best of all are American made. I am going to add their name ot the headcovering list. I highly recommend them. I got carried away and ordered 15 different ones. Flowers, paisley, polka-dots, stripes, frogs, guitars-I covered the whole gamut.
This was my first bald day in public and I went totally bareheaded to take my Dad to swimming therapy. I actually don't think i look that bad. The only problem is I thought i was 100% gray-turns out not true. I have a 5 o'clock shadow length still up there and it is patchy between dark brown, gray and white. I can't decide if I look like a Harlequin colored great Dane or the ass end of an Appaloosa pony. Wonderful how many fashion options are avilable to me now-if I don't want to look like a pony I can always got back to our earlier posts when we were decribing our scarf looks. Mine was early depression era factory worker.
I hate the stubble because it seems to grow in different directions. Some lays forward and some backwards and some even sideways so when I try to sleep it rubs aginst the pillow the wrong way. One thing i won't miss is the wild wierd old guy eyebrows that have been popping up. They are gray and long and stick straight out-not even vaseline will hold them down. And speaking of wild hair-I have not lost my southern most stuff-I think some of you lost that first.
mdg-I joined a gym today-not starting til Monday though. too many appointments plus big treatment tomorrow.
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Maria - in answer to your question, I think I'm having night flashes/sweats. How do you know the difference between hot flashes and a fever? No, it's not a joke. A girl I work with suggested by taking your temp, if no temp, no fever = hot flash. Probably right. I'm already on anti-depressants, 200 mg of Zoloft daily, so no idea if that is helping or not. I'm behind you in the cycle a couple weeks, so I may just be getting started. Oh goody.
Pasmith - you poor thing, colonoscopy on top of all this! blech! I keep thinking I really want to get one for preventive purposes, but think I'll wait till fall for that fun. My teenage step-daughter is amazing, she is really sweet and very thoughtful. The antithesis of every teenager I ever knew (including myself especially). I not only wear make-up, but also earrings. I find myself kind of a streaker when it comes to the bald head. I had to stop myself twice in the past two days from walking out with nothing on my head, once to take the trash out and once to walk the dog. I don't want to deal with my nosy neighbor right now, so just shoved on a ball cap. I also put one in the car so I can take the wig off and wear it there. Soon it's going to be too hot to wear the dang wig outside in TX, so I better figure it out.
Penny - I'm glad your mom doesn't upset you. It doesn't sound as though she says those things to hurt you, more like she just says what comes in her head. My filter doesn't always work well either. Her lines do crack me up! I want to hear more about this road trip you plan on next year. That sounds fascinating.
Husker - hang in there. I have left all the hair product scattered around still. Maybe I'll pack it up, maybe not. Then I feel like I might start using it any day. Plus I can use some of it on my wigs.
MrsM - The ceiling fan helps me too. I have a heater on the mattress pad that I turn on (for the body aches) and have the fan on as well. I have bizarre-o dreams now. I'm sure it's all the meds combined, but I have a movie every night in my head that goes from weird to weirder.
I made an appointment to talk with my therapist this week. My new paranoid and completely unfounded thought is that DH is going to have an affair. I can't remember when we had sex, and I know he misses it and he misses the "old me" paying more attention to him too. It's completely irrational, but it's there. I need a pro's help on this one. Between my uglies and non-existant sex drive, his preoccupation (probably with work) and his continued activity without me, I'm really going off the deep end. He has been attentive and caring and I can't even think why this would be in my head. He has been to every doc appointment, every treatment, called me when not home and I feel like crap, cooked, gone to the store, anything you can think of so I've got to figure this one out. I haven't said anything to him and won't. I was asking him his schedule this week and he got kind of flippant with me about it. What the heck is this? I didn't read about this in any books.
Hope the chair goes well for y'all that are going in this week. I'm waiting for my post-chemo feel good days anxiously.
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One more thing, the hair (stubble) on my head is still coming out four-five+ hairs at a time and more with the lint roller. But, nothing is coming out "down there"!?! REALLY??? Has this happened to anyone else? Only I would lose all the hair on my head, probably eyelashes and brows next, and not lose that. WTH?
also Kymn - how are you today? Hope you are feeling better too!
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Hi!! I just went through chemo n now rads!! I lost all my hair in nov!! 2 weeks after chemo. It was terrible to go through! I got a free wig from cancer society n have gotten use to it. My hairs just finally coming back. I laugh w my 7 year old grandson. We match!! Have strength!! You will get through this. I felt the same way. Im now getting burnt through radiation, but nothing like chemo. I have worked through the whole thing. Hasnt been easy, but you will look back soon, n will find strength!! My best is w you!! xxoo Vicki
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supersally,
I am 5/6 thru chemo, still have not lost all my hair "down there", maybe 60%. I also still have some short 1/8 inch stubble on my head that never gave up. I was afraid to shave it and nick my skin, no itching. Still have eyebrows and lashes, but brows have thinned abit. Maybe I will get lucky (not sure you can be lucky and have BC). As far as the hot flashes, got them, different from fever as they come and leave quick,sometimes then I have chills for a few minuites afterwards, they have become more frequent with each round of chemo. So far mostly as night which is a good thing, with the wig not sure how I will do during the day. hang in there!
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Hi Everyone, hope you're all feeling well and the weather is as lovely where you are as it is now in London (I don't get to say that very often). Had my second round of FEC today - only 1 more before moving on the "T". I was there for bloody ages!!! 4 attempts to get a vein. I can't understand why they were being so shy, normally most nurses love my veiny hands and arms. Finally had to wrap them in a heating pad and wait 1/2 and hour. Otherwise, it went well and I feel perfectly normal(ish) so far. Except my hair is definitely going!!! The nurse told me that with the rate of shed I was experiencing, the cold cap wouldn't really do anything - just prolong the annoying shedding. It was insane, by the time I got to the clinic, my entire coat was filled with hair. No wonder people gave me room on the tube : ) So, decided not to use the cap and just let nature take its course. I don't really have a trusted hair dresser in London as I usually get my hair cut in Brussels - where I live on weekends. The problem is that they don't speak English and my French is poor at the best of times. I can get by with restaurant French, but don't know a word of cancer French. Hey, maybe you can help me Kym??? My clinic as a hair and make-up consultant on staff and she has offered to cut my hair next week. She's also warned me off of just going to get it buzzed as it can create scalp problems??? So if I can survive the shedding that's what I'll do. But, if anyone has any other suggestions, so let me know.
Reread what I wrote about my mother and think I was just really cranky yesterday. Yes, my cancer has been an amazing source of social currency for her, but I do believe she really means well. And in fairness, she's paying for the 2 bedroom flat rental. Now if she would just quit telling me what to do, I'll stop acting like a petulant teenager.
I'm also getting serious night sweats and the very odd day sweat as well and I can't stand it. I'm in my 40s and didn't really expect to hit menapause so soon. My onc suggested taking pure SAGE tablets. She said works for about 50% of women who try it, but for those it does work for, they swear by it. She also suggested buying a "chillow". I've bought some sage and will give it a go. I'll let you know if it works.
Oh and MGD, how about adding me to your master list. My chemo cocktail is FEC-T (3 FEC and 3T) but my favourite cocktail is a champagne mojito!!
Lots of love and warm wishes to you all. Robin x
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Add me please!
I began my regimen March 11th and am now having more questions than before!
My cocktail: rasberry mojitoI am AC every 3 weeks x 4
Then Taxol once a week x 12
Besides the regular SE, yesterday I noticed the first dry, dark spot on my face. Today it has been joined by at least 8 other 'dark' spots. Is this just more 'good cells' being wiped out by the chemo?
Also, I had a port inserted and am very grateful not to have this stuff go through veins in my arm. However, I am somewhat obsessed that it has been installed correctly. It's low on my "DD" right breast and the incision opened the first night home. Chemo was delayed because the incision just wouldn't heal! The radiologist indicated a kink near the shoulder blade but we've managed to work around it. My major concern is regarding the Adriamycin and lack of color in my urine. The first chemo round, I immediately could see the dark red in my urine, which then went through numerous shade changes over the course of 3 days. The second chemo round - NO COLOR at all in my void! I am so worried that something 'came apart' with the port and it is infiltrating. No pain or burning during the infusion though.
Has anyone else experienced no sign of the red devil in their urine?I think I'm doing really great at this point, so if someone can relieve this one worry, I would greatly appreciate it. Oh, I did speak to the nurses last week when I went in for a blood draw at day 10 and they said they'd speak to the onc.
This is a wonderful site by the way and I thank you all for providing the support and information that is invaluable to all of us!
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carolk_cu: Welcome!
I am on AC also. The dark spots on my face are DARK all of the sudden. They were not too noticable before but now this week they seem to be much darker. I am assuming it's from the AC. What do you think? I am glad you asked this because I was really noticing them alot as I stared at my bald head and face with dark spots and horrible circles under my eyes!
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Hi ladies, just checking in its day 6 including chemo day unfortunetly still feeling poopy, very emotional, still sick to my stomach, no energy and am trying to plan for my DD 9th birthday party. I feel ugly I hate mirrors, I resent my husband cause his life goes on and as Mdg put it I just feel so very lonely
sorry I have nothing better to post right now but wanted to let you all know I am still alive and kicking not in hospital or anything just lying on the couch fading away
will check in later when my mood lifts
hugs to you all, sorry for those of you feeling like me, congrats to those getting closer to the end and good luck to those in the chair this week
Love Kymn
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Hi carolk_cu - I think it very unlikely your port is infiltrating, you would feel burning. Also, when mine was not working properly they tried putting saline in first and the tissue round the port swelled up like a balloon where it was leaking so you would have noticed. I would not worry.
Kymn - so sorry you are still feeling bad. We are all thinking of you. Our lives are not going to be like this for ever. I get resentful too sometimes, there are days when I resent old people (cause they have lived so long) and young people (because they are fit ) and everyone with hair. Lol - I am amazed I speak to anyone sometimes.
Remember the drugs give us depression, it is a side effect, no just us being wimpish.0 -
Robinx: My onc/ after I had already shaved my head said she rcommends shaving it bald as your head gets real sore if not. I dont feel any ithching or anything since I did so. Everyone else, I hope you are all doing okay. I go next Fri. to another state to have a second opinion itsa bout 3 hrs away,b ut if I like them they will prescrib my medications and I willl finish out my treatments which is an hour away. Like I mentioned my onc/ wants to prescribe anything to make this all easier on me and am worried about bone pain coming next already having back problems I wanted to see if another doc felt diff, and will give me meds to make this easier. I sure hope this other state said noone goes through this without meds for comfort and pain. be well ladies.0
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Sorry almost to reply that yes I have lost 3/4 of hair down below but most of it was not until after #3 chemo. It doesnt itch at all though.0
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Lilylady~
I just went on the Sparkling Earth website to check out the hats and all I see are scarves...didn't see any hats on their website...am I missing something? The ones you mentioned getting all sound adorable so I thought I'd see what they've got. I had my son-in-law shave the remaining hair off my head Sunday night -- mostly wispy hairs that went every which way -- and I have to say my head feels 1000% better. Not itchy, no little hairs shedding all over the place. I'm bald but it feels clean and wonderful when the shower water hits my scalp. Thank God it's all temporary though, that's all I can say. Anyway, I couldn't find the hats you talked about. Maybe I missed something on the website??
Thanks!
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I don't wish this on anyone, but I am so happy to have this forum to hear other people going thru the same things. I am feeling kind of yucky. I seem to feel much worse than I did after the first AC. I hope this trend doesn't continue. I am also feeling lonely and pretty sorry for myself. My DH is out of town for a week at a convention in Las Vegas. He won't be home until Sunday. I feel pretty upset that he left. The trip was scheduled before I got diagnosed, but if it were the other way around, I would have canceled. Men!
I can identify with your comments Penny about resenting everyone. It all just seems so unfair. Thanks for reminding me it won't be forever.
Also on the hair, I am the same as some of you. Have lost almost completely everything on my head. I just have a few strands and one little patch. I cut it with scizzors as close as I could. Also, I'm Irish and don't have a lot of hair, but down south I don't seem to have lost anything. Crazy. I think I did lose some eyelashes as well.
Good luck to everyone in the chair this week, and I hope everyone's side effects are minimal.
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I am not up to speed with all the updates here but wanted to wish everyone well. On Friday I head for chemo 3 and I know I'm not the only one this week. On the jukebox I'm selecting Scandal's "Goodbye to you" dedicated of course to the cancer! Along with that song, I'll be picturing Pac-men gobbling up my cancer cells while in the chair. (I heard that from Henry Winkler's wife when she was going thru chemo - isn't it an awesome visual?!). I realize I'm dating myself with both of these references - lol. Sweet dreams all. Stay strong!!
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Husker: I hope you had a good visit with your niece. How nice! Sorry about the buzz
How did you get the "holiday" schedule chemo's? I only got every third Wednesday! I hope you do well on Friday....we can be hungover together as I go tomorrow. Pasmith: I am glad to hear you are ok with the new look. You have such a great attitude!!!! I am glad you are exercising too. I am convinced that exercise is why I feel as good as I do. I do 5 days a week and have not missed any since starting chemo. I hope I can continue. I always feel emotionally better after exercise!!! It helps me forget about everything else going on in my world right now.
Divine: I will put the fan on tonight...maybe it will help. I was pre-menopausal before chemo and showed no signs of menopause and was still ovulating (due to monthly ovulation pain I am pretty sure) so I was not prepared for chemopause! I am sure it will continue with tamoxafin too....joy joy!
Lily: Your hats sound so fun and adorable! Good for you to get them and be stylish through all of this. I am so excited you joined the gym! I need some more workout gals! I do believe that I feel so good emotionally and physically because of exercise. I honestly do. Even on days when I don't want to go, I MAKE myself. I committed to 5 days a week before starting chemo and I am going to do my best to stick to it! I was also going to mention that if you are looking for another place for a second opinion, U of Michigan may be a good option. Ranked 12th in the nation for cancer. They are a national cancer center. I LOVED my surgical oncologist there. He's great. They do a full day clinic on Mondays where you go in and they look over eveyrthing and re-do tests. I brought films but the insisted on all new mammo's and U/S (before my BLMX). They looked at all of them. I met with the surgical oncologist in the morning to review the test results. They also do tumor board while you are at lunch and taking a patient education class with the nurse educator. Then you meet with the surgeons again to review tumor board recommendations. If you need to meed with Rad onc and med onc they do that too. I was there from 8am til 5pm and it was really complete. Just an idea if you can't get in somewhere.
Supersally: Mine only last a few minutes then I am cooled off and need to put the blankets back on. So annoying! It wouldn't be that bad if it didn't happen multiple times a night! Poor DH can't sleep as I roll all over kicking covers off...... I also think your feelings about DH are normal. I feel insecure at times about my DH not being interested or finding me attractive, but now that the boobs are big...he's all over me! I struggled with this early on a lot and kept saying things to him about my worries. He kept reassuring me. Did your husband read any books on dealing with a spouse that has cancer? I checked one out of the cancer library for DH and he read it. I didn't read it...I figured I would only be disappointed if he didn't do what the book said. He did read it though and I am sure it helped him understand what little a man can comprehend about a woman's needs (LOL!). I think the therapist is a good idea....your feelings are very real to you and they won't go away unless you deal with them. Good for you taking care of your emotional health. I need to find a therapist...soon! I lost 90% of the hair down below and it started on day 13 after first chemo.....I wish the rest would go away. The parts that stayed more thick are the parts you would usually shave to not see while wearing underwear/bathing suit. So now what, am I going to have to go get wax job just for the remaining hair on the sides??? Why can't that part go away since it's the part you see?????
Vlady: thanks for popping in! I am glad hair is starting to grow back.
Adangel: I am only in my 40's too...was not expecting menopause yet either. I am glad your mom can come and help you and support you. That's great. Glad she is paying for the larger flat...so you don't have any more stress with all of this! Sorry the cold caps are not working for you. They told me it works better on some chemo's than others. How impressive that you have hair and makeup people available at your cancer center.....nothing like that here in the US! I will add you to the list.
CarolK: welcome to our lounge! Glad you found us to hang out with. Pull up a barstool...first round is on the house. You will always find support here and some laughter. We even have a juke box so pick a song you want to share with us! I don't know about the brown spots...I am on a different cocktail and didn't know any of us would be blessed with brown spots too! One more thing to deal with...sorry that you have them
Colodisney: I have horrible dark circles by eyes too. I always have them (I am Italian....we all have them) but now they look worse. I am using so much concealer these days and look tired again shortly after applying it. I need a miracle cure....
Kymn: I am sorry you are still in a funk. It's times like this I just wish there were no miles between us all. I see me picking you up and taking you out for a drink and listening and saying silly stuff to make you laugh! HUGS! It is hard to do this by yourself. I get it...it doesn't matter how many people support you, you have to do all of this on your own. You know the chemo messes with what hormones you have left....have you talked to your doc about this? Maybe they can suggest something or prescribe something. Just an idea. I hope things pick up for you soon!!!!
Just so you know I resent people too. When I go to the gym in the morning and see all the stay at home moms with their kids all happy and enjoying life I get angry that I am only off from work because I have cancer and I have to go back to work after all of this and miss time with my son and my life is forever changed and I will forever worry about cancer coming back. I get resentful that they don't have the burden of something like this.....I know I sound horrible...I have never been able to say this or write it because it sounds so bad....but it's true since we are talking friend to friend. I just wish life was that carefree for all of us........Lorenar: I would switch docs too! I barely asked for meds for sleep or anxiety and was given an Rx right away with no questions asked. I asked for benedryl in my chemo...my nurse checked with the med onc, came back and put it in there. I hope you find a doctor that is more understanding and helpful. Keep us posted!
Maui: Glad you feel better and head is no longer sore! That's good!
Kay: I felt weepy when I got my port in and DH was gone. I cried a lot and missed him. I understand. I know what you mean about having someone to go through this with. When I feel sad or frustrated, I turn to you gals because my in person friends and family don't get it no matter how hard they try. It just feels lonely...you guys are the BEST! Lean on us anytime. I hope you pick up soon. My recommendation...buy yourself some pretty flowers, eat a tiny bit of good chocolate and take a warm bath with candles..... If I were closer, I would be showing up to take you out for a drink girl!!!
Silia: I know that song! YOu are not alone in that one! I was an 80's gal so danced to that song a few times. That would be a good karaoke song for all of us. I like the pacman image...now I am dating myself...I know pacman!
I am so glad I got to catch up with all of you! I had my LAST fill today (I am at 510cc's -which seems huge to little old me!). I did my exercise today and made a good dinner. I am headed for the chair tomorrow with my freezing Cold Caps....send "warm" thoughts tomorrow. I will check in tomorrow gals. Have a great night!
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mdg,
Hats off to you for exercising. I was so good about going to our local Y, prior to BC and even did a couple of ladies boot camps. I am still paying, but scared to go and catch something. Do you just wipe eventhing down first? What are you wearing on your head? Like you, I am usually working when the stay at home moms are at the gym, so I should take advantage of the time I have off while my guys are in school. What type of upper body exercise are you doing since you also have TEs? Sending you one of my hot flashes to keep your head warm tomorrow. HAHA
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Silia,
I'll be joining you in the chemo lounge on Friday, my #3 treatment as well. I am on a two-week schedule. Been tough this time emotionally with the head shave. I was more than pathetic last night as my poor husband shaved my head with cordless shaver I got at Walgreen's for $10 just for this purpose. Cheap thing died before he was done and we switched to shaving. I just cried and wiped snot off my face and apologized for putting him through this. He didn't say anything. Just did what he had to do and went to bed. I was a crazy woman, put up newspaper on the mirrow in the bathroom and bedroom and took a shower for 20 minutes just sitting there crying some more. Better today, but yikes. Kymn, I'm right there with you, sistah! Maria and I will come and take you to lunch. No, to a real bar. And we will talk about our husbands, and make fun of the women who are there to pick up men, and we will laugh at how silly they are.
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Christine: I do the elliptical and my gym offers antibacterial wipes so I wipe it down really good before I workout. When I do weights I just can't wipe down everything so I do a few machines and when I am done I go wash my hands right away and my water bottle before I leave the gym so I don't bring any germs home with me. As far as upper body....all I do is some physical therapy exercises. My PS won't let me do anything....so picky! I think I will start to add a few things with very light weights in the coming weeks and see what happens. I do a lot of leg things....elliptical and then some machines, lunges, light squats, etc... As far as the headcover, I am doing cold caps so I have been able to keep my hair. It's got gray roots and is only washed once a week lately (there are handling/washing restrictions) so it is not pretty, but it's hair. If I had not done cold caps and lost hair I had planned to wear do-rags (bandana's) or a Nike type baseball hat (mesh like - light weight). I really believe in the power of exercise. I know it has really helped me stay feeling good all the way around.
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Hi all
I had taxol/Herceptin #4 today (out of 12 weekly), so I am on a steroid high now and thought I would get some computer time in while sitting in bed wide awake. I have ambien but that doesn't work well even on the first day.
Hair is thinning but it is still there at day 22. I feel certain this treatment today will probably cause it all to end, although my optimistic onc says maybe it will just thin! I think his version of thinning is much different from mine. I don't plan on looking like the guy in Beetlejuice with the crazy hair tufts.
My story this past week is crazy. I stressed so much over the chemo and the side effects before starting and I have had virtually none, other than the hair and the sleeplessness for a couple nights. Well ok, I do have hot flashes too, but at 55 I figured I would be getting those soon irregardless of why, so don't count them.
On Thursday while I was out running errands, left side of my back started to hurt (I do have one monitored kidney stone there for 8 or 9 years that hasn't changed), then I broke out in cold sweat, then felt sick. What to do...is this a chemo thing or a kidney thing? Decided to start with oncologist as I was by his office. Strolled in, told them the issue. Doc wasn't there then but they did urinalysis and sent me home saying they would call. Felt ok then until I got home. Pain intensified with major nausea. Called onc's office. They had talked to doc in the meantime and told me to get a cat scan and then come see him. (office is in building behind hospital). I felt bad enough by then that my husband worried about my driving and came home and took me.
While registering for cat scan, I am busy throwing up, feeling pain, and trying to get the sloooow registering person to speed it up as I was laying across the desk with my head on it. Finally cat scan done and waiting in the onc's office.
I am laying in a chair for a couple minutes when he walks in. Says (in his perfect King's English Indian voice which I love) "You do not look good. Come back immediately. As I am laying on the bed, he pulls up cat scan, says the one they are watching is still in its place, but there is a two mm one that is on a roll. Then tells me he knows how I feel as he had them and carried a syringe of pain killer around for a month just in case!
Now, while everyone is talking about how clammy I am and that they are going to give me pain killers and fluid,as they feel my biggest problem is dehydration, before they send me over to the hospital (since I couldn't keep anything down), I am thinking that I am going to pass out. JUST GET THE DRUGS!. Finally I am in the chemo area and they are hooking everything up. The whole staff stayed late, running around, to help me which was so nice, especially when I have just pulled my shirt down for God and everyone, not caring who is looking while they hook up the port. After 15 minutes with fluids and whatever they gave me, life was BEAUTIFUL. No pain and feeling much better. Spent the night in the hospital on fluids. Came home, had pain off and on all weekend but was determined to go see my niece try on her wedding dress as her mom died a few years ago and I am trying to make sure she has all the special times. It was my sister-in-law and we were very close. Finally after a bad time on Sunday, taking pain killers all day, I have felt better yesterday and today. Saw urologist who said same thing as my onc and gave me a drug. He feels I probably passed it on Sunday since I felt so bad that day. Will have fu xray in 2 weeks.
Sheesh. Both docs say it is totally unrelated to the chemo. Go figure.
Now for the other stuff that I have been part of in conversation.
Raw foods-Talked to doc and the nurses about it today. Interesting conversation. He and one nurse, who went to a seminar on that topic said that a study was done with those eating no raw stuff, and others eating carefully washed raw stuff (not meat). There was no difference. So he said eat whatever I want and wash it carefully. The older nurse in the office doesn't believe in that and wouldn't even stay for the conversation. She tells her folks to follow the neutropenia (sp?) diet. The other nurse who went to the seminar said all the old school folks will say that and the newer ones don't so much. If you do have low white counts however, she said you need to be very careful about the washing.
Exercise-my ps lets me do just about everything. All the aerobic stuff is fine and he encourages it. I do elliptical, walk on treadmill and bike. And I am like the other poster who wipes it down. I slather it up before I use it (don't trust those before me) and wipe it down after, then anti-bacterialize my hands on each machine. I am sure it is overkill. Any arm exercises I do, I just run the ones I want to do by him for ok. I use a few machines on a very low weight that use arms to help get the waist exercises going. I haven't done much with weights yet other than those machines.
Alcohol-Mine says a drink now and then is ok. Didn't say anything about the day before chemo. OOPS! I had the best martini last night at the Melting Pot with a friend. Rasberry Vodka, Cream and Vanilla something (probably vodka). It was fabulous!
Manicures-Asked about that today also. They encourage pedicures with no cuticle cutting. Said The skin on your hands and feet can peel with chemo and it helps keep them soft. I know herceptin can mess up your nails and Taxol can too, so I sit with my hands and feet in frozen peas all during chemo to hopefully avoid that. When I get a manicure or pedicure, they don't use any acetone remover...too drying. So far, so good. I am just doing clear so I can see what is going on.
Well, off to a new project or maybe reading for awhile.
I hope everyone does well and feels better. My husband is wonderful...He is sleeping next to me in bed while I have the light on and the computer on my lap. Makes me laugh.
OH! A nice thought! My back has been itching between my shoulder blades as I can't get to it easily with my favorite Body Shoppe Body Butter. I made a sugar scrub with sugar, lemongrass essential oil for smell (although any would work I think), sweet almond oil and a little vitamin e oil.I used it all over myself in the shower and husband came in and did my back. My skin felt fabulous and no more itchy back. I am going to use it twice a week.
Hily cow, this is long! Sorry all. HOpe you have time to read it!
Jill
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Hi everyone,
I'm new to this board. Glad to have a place to bounce stuff off of ladies who are in the same boat!
I was diagnosed by surprise by a routine mammo in January. Blessed to have a small stage 1 mass which was completely removed in Feb & my sentinel node was neg also. All other diagnostics clear.
I'm getting herceptin, taxotere, and carboplatin every 3 wks x 6 times. Then just herceptin every 3 wks x 11 more which is basically for the remainder of the year. Radiation and tamoxifen after that.
I had my 1st chemo 3 wks ago on March 21st. Had my 2nd one today . With each treatment, I've had leg cramps and back pain from the iv benadryl. It's uncomfortable but bearable. I'll have to ask about taking oral instead. I never had nausea or vomiting but the heartburn was bad for two weeks - actually that started after my port placement. Nexium did nothing. So far, Prilosec works better and i sneak Pepcid in as needed. I felt ok after my first chemo. Went to work every day with a lighter schedule. I was just tired and foggy in the head, until day 4 then extremely fatigued and had awful diarrhea. I ate next to nothing for the first week. Just when i thought i was turning the corner - day 7 and 8 I felt normal! - I developed a fever and spent 3 days in the hospital for neutropenia. My neut count was in the serious toilet (20!). I had really bad mouth sores - magic swizzle helped. I got iv antibiotics and neupogen injs for 3 days and rebounded well. Home by day 12. Week 3 was mostly normal and I was able to work full time and eat normally. Had some constipation and night sweats but those are bearable.
On to the next adventure- hair loss. My hair was originally shoulder length and really thick and curly. On day 13, my scalp ached and I started getting handfuls when I ran my hands through my hair. I showed started wearing a scarf to contain the mess. I showed my kids (7 & 8 yr old boys) what was happening at that point - we had talked about it & fortunately, they think it's hilarious and aren't grossed out or embarassed. I think what bothered me most was seeing the gobs of hair in the shower and on my pillow. It was an emotional time! Day 14 was worse. I brushed the clumps out. It seemed like it would never end! On the 14th night, I couldn't take it anymore and my friend who's a hairdresser came over late at night after my kids were in bed and we decided to just shave my head. Man, that felt weird. My poor husband who is amazing didn't know what to do so he actually watched. (Said he'd feel bad leaving me alone). It took me a few days before I was brave enough to go without a scarf around the house but my hot flashes won over and now I leave the scarf off when I'm home about half of the time. I ordered a wig and bought a face framer of bangs to wear under a surgery cap to work. I've pulled it off with every client so far! Makes me giggle inside I use a sticky lint roller to so over the stubble a few times a day. I'm not getting much which, if course, made me freak out and question my decision to shave but I have a feeling that I'll lose more after this round and I really couldn't take the hairy mess so I still feel that I made the right decision to buzz it. I looove the difference in the shower! No more expensive shampoos and it takes me no time to get ready in the morning. I'm going to try to find that silver lining when I can!
I am very lucky to have a huge support system of falimy and friends. The parents in my sons classes have actually signed up cook us meals almost every night for a month. Amazing.
I couldn't be more proud of the way my husband and sons are dealing with all of this.
Going to get my first Neulasta inj tomorrow. I had some bone pain and muscle aches with Neupogen in the hosp. Advil helped some. Today, my onc suggested taking brand name Claritin too. Will definitely try it. I'll be getting Neulasta after the next 4 chemos too. Apparently I surprised my onc!
I could have done without the baptism by fire but I'm alive andkickjng and this will all be over one day & I'll. be proud to call myself a survivor!
As for that cocktail ...... I really enjoy a glass of chilled red wine. Since I am a proud Ohio State buckeye alumnus, I'll stick with the RED!
God bless! Michele
Invasive ductal, 2.5cm diagnosed Jan 2011. Bone scan, Ct scan, MRI neg otherwise. Had right lumpectomy Feb 2011. ER ++++, PROG +++, HER2+++. Sentinel node neg, margins clear, stage 1. MUGA scan 3/18/11 normal. Port placed 3/22/11. 1st chemo 3/21/11. 2nd chemo today 4/12/11.0 -
Morning all, I was up at stupid o'clock this morning thanks to the steroids. Feeling rather groggy thanks to the sleeping pills that are supposed to counteract the steroids. Did manage 6 hours of sleep but feel like I was hit by a truck. Tummy feels strange - nothing too horrible yet, but I have a sinking feeling that I won't sail through this round as easily as I did the first. Already I feel (and look) liked I've aged 10 years in the past 3 weeks. Vanity is probably one of my worst vices and I hate looking in the mirror and seeing this strange tired person looking back. Who is she and how did she get in my mirror????
Kym, perfectly understandable being in a funk - who wouldn't be. Me, I guess. This is going to sound strange, but I wish I could let myself get really down about this and have a good old cry. I'm sure I am repressing a sea of tears and self pity and I wonder if I'd be better getting them out. I wish I could. Problem is I have this weird sense of optimism ingrained in me along with a "if life throws you lemons, make lemonade philosophy". So, here's some of the stuff that goes through my head to keep my sane and positive, maybe it will help. When I begin to think this is so unfair or when someone (usually my DH) says why you?, I focus on how lucky I am:
I'm lucky to have found this when I did. I'm lucky I had a random screening in London in my 40s when the official screening age is 50. I'm lucky I have a wonderful breast surgeon, the best oncologist and a radiologist that could be a friend. I'm lucky all the breast cancer nurses are so sweet and funny. I'm lucky I have a team of complementary therapists, image consultants, accupuncturists, and a cancer dietition/nutritionist (who is also a cordon bleu chef) at my disposal. More importantly, I'm lucky to have a DH and family who swear they will still love me bald. I'm lucky that I actually believe them. I'm lucky to have a Mom who cares enough to come across the world to look after me (although she will drive me to the brink of insanity). I'm lucky to have friends that support me and cheer me up. I'm lucky to work for a company that is totally supportive of my needs and time off and has paid for the private medical insurance that gives me 24/7 access to the wonderful medical team. I'm lucky that this massive slap in the face has forced me to get healthier... eat very well... drink less... and finally stop smoking. In my mind, I see walking away from this a healthier person than I was before (albeit a bald one). I'm lucky that chemo forced me to cut my hair shoulder length which I never had the nerve to do but actually like and will hopefully have one day again, and now for the weird one... which I feel kind of odd admitting, I sort of feel lucky to have this experience, to understand what it is about, to face the kind of adversity everyone dreads, and to prove I am a survivor!!!
Yes, like everyone, I have bad moments. But these thoughts help me keep everything in perspective. Without the bad, how can you truly appreciate the good? I find I am more motivated by hope than by fear. Hope these little thoughts help some of you. If not, just ignore my rambling
mdg, best of luck in the chair today. I'll be sending lots of warm thoughts directly to your freezing head. I really hope the cold caps work for you. I'm shedding worse than ever. Must find a solution fast.
Once again, lots of love, warm wishes, and positive thoughts to you all. X
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Oh yes, one more thing:
I'm lucky I got a high score on my Oncotype DX because without it I'd have nearly a 20% risk of distant reoccurance. Oncotype is not offered in the UK but I'm lucky that I found out about it online. And as shitty as chemo is, I'm lucky that with everything else, it will bring my risk down to 5%.
And the very last one (for now):
I'm lucky to have found this board and "met" all you wonderful women. Reading all your posts has made me smile, laugh, and even cry - yes I can cry for others, just not myself. Most of all, it makes me realise I am not alone in facing this. Its not just the support, its the "getting it". And for that, I feel lucky.
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Hello Ladies! Happy Chemo Day to me! T-minus 6 hours and counting. I am nervous, as I've had one "good" chemo and one BAD chemo...but wouldn't miss it for the world, lol.
I've been rather absent here and need to read through and catch up on how everyone is doing. Who else is in the chair this lovely Wednesday? Best wishes for successful treatments today!
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