March 2011 chemo-lounge
Comments
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Lily - so pissed for you that they are going to make you fight for proper coverage when you've got other things on your mind. It's immoral. But I'm confident you will get it sorted eventually. Ford or Humana can't take the hit of looking like such assholes on this issue. If they do, maybe we can all ramp this up a little by taking this issue to facebook. that gets corporations to move fast! I work in advertising and clients freak out if anyone starts saying anything bad about them as it can start a domino effect (happened with one of my clients, Pampers, last year when one woman griped about a diaper rash...spread so fast it brought them to their knees). Humana would not want that.
Was feeling super cocky about how well I was doing with the chemo, then woke up Monday morning freezing cold, my heart racing and panting like a dog. Took my temp and saw it was 102 and my oncologist's office (after they finally called me back an hour later) told me to come right in. I barely got myself out of the house and into a car service and then of course I had to wait like 20 minutes, panting, and thinking I was going to have a heart attack while everyone else in the waiting room stared at me.
Finally got to see my oncology nurse, and she saw that my heart rate was 140, my temp was 103 and we discovered that the area from my mastectomy site all the way up to my shoulder was bright red. She called an ambulance and had them take me the 3 blocks to NYU's hospital. Was kinda scary.
Long story short, they got my cranking on iv antibiotics and admitted me. Felt soooo much better within like 6 hours, but they're keeping me here for a few days so I can keep getting iv antibiotics and they can keep an eye on me. But vitals are back to normal and I'm just sitting and watching iv's drip. I was getting super tired going into work everyday, do I guess this was one way out of it!
Anyone else noticed changes in their periods yet? Mines late, which I guess is normal considering. But I've been every 28 days like clockwork for 30 (started at 10) years so it's just kinda disconcerting. Never thought I'd miss the damn thing.
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jenn_h and bluecowgirl: I actually did surgery first before the dose-dense A/C and T. As I look around, it seems like most who are staged at III did neoadjuvant. I actually had a pretty small tumor but had lymph node involvement (palpable...you know that's bad), and I guess they opted for surgery first (including axillary dissection). Who knows. I think our minds play tricks on us...should I ask this, or do I not want to know the answer. I agree, staging is less than perfect. I freaked over a stage III, even though one less node would have put me at stage II. It's all in the perspective.
mdg: so sorry about the exchange business. Sometimes I get so frustrated by the medical business. They seem to have nothing at all invested in us, and it's very disheartening.
bikenyc: I am so sorry to hear how sick you were! I hope you bounce back quickly.
regarding hair: mine definitely felt dry and straw-like before it started falling out! I was so careful with it, using baby shampoo and towel-drying...as if that would make a difference! Now my buzz-cut is coming out all over the place.
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Good morning ladies,
To our newbies, passmith,overy and sporty a big open hug welcome from all of us. I know I speak for all when I say sorry you have to be here but we welcome you to our little family.I know you will find as much love and support and knowledge as we all did during those first trying few months when your whole world has been turned upside down. I have only been here 3 months and already feel like a vetren with all the knowledge I have obtained.
Overy so sorry you didnt sleep well last night, first chemo does such a number on our brains and then we get there and it really wasnt worth the fuss we give it. I have round number 2 next week and although I had a few days were I felt like poo, I cant wait to get it over with and tick another one off the board. By the end of April my 3rd treatment is the 28th I will be half way done yipeeee
Sporty, there will most like be a cancer team, your nurses and caregivers etc who will direct you to what ever it is you need. If you are in a larger center there is a look good feel better class where you will get lots of gooodies for free, make up lotion etc and lots of centers have wig exchanges where you can get one for free. If you google your area there will also be a listing of hair salons that carry wigs or headcoverings that you can try on. My advice to you is to try them on . Ordering on line is a bit tougher because you really dont know how they are going to look on you until you try them on. I dye my hair blond, well when I had hair lol and the blond wigs looks hideous on my the brown looks the best go figure.If you are unable to get quetions answered or are confused about the answers just come here and there will always be someone who has been there done that and can help you out.
passmith I think I have spoken with you before but I do have chemo brain so cant quite remember.I had the ithcy tingle scalp almost from day one it was wierd. I didnt get to the shedding stage as I just took it all off on sunday that was day 10 for me. I wasnt waiting around to have it fall out in clumps in my hands I think I would have had a melt down. You will know when the time is right for you, everyone handles it a bit different.
Mdg I am feeling your frustration, oh how nice it would be to not be treated like a dollar sign hey. The medical sysem is a bit different here in canada so the whole insurance thing is kind of hard for me to understand but jeez youd think they would want to help us out they know what it is we have been through . AARRRGGGGGG big scream with you.
Penny I too am very lucky, the people I work with have really rallied around me too and anything I need or any time off they are fine with they just want me to get better. I feel so blessed especially when I hear crap like what poor Overy is going through, I agree like HUH you need me to colour in green, I would think a simple email of the dates you need off would sufice yes???
bluecowgirl you are lucky to work for yourself I have read a few of your posts and it seems so peaceful where you live.
Ok ladies well I am at work so need to run hope your all having a great day full of cancer free thoughts.
Hugs Kymn
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BikeNYC - wow, girl, glad you got yourself to the doc! You rest up in the hospital and let the nurses take good care of you. That sounds scary.
MDG - don't put off your vacation. I think the vacation is more important than the exchange surgery for you. We all want to get back to the "new normal" as quickly as possible, but you will be impacting your DH and your son as well. They deserve that vacation just as much as you do, it sounds like a blast! I think if you talk to your PS you can get on the cancellation list, as Penny said, or just set it for the soonest he can get you in. I think one reason they get us in quicker for the BMX and TE is that the cancer can be spreading during that time. I know my initial surgery was actually quite a bit later than I would have preferred, I was dx'd on 12/15/10 and didn't have surgery till 1/31 because that was the soonest the BS and PS and op room were all available. My BS wanted to get me in before but had a vacation planned, plus the holidays. I'm actually going to do my exchange surgery a little later than I could otherwise because PS said I should go on vacation right before exchange, not right after due to incision concerns, infection, etc. Hang in there, Maria, it will work out. It was your time to snap and go "cancer bitch" on the poor nurse!
BlueCowgirl - LMAO at the "Office Space" reminder. I love that movie!!!
Overy and Lilylady, good luck today with chemo, hope it goes well and SE's are minimal. I'm pretty sure your boss used to be my boss. He'll get over himself I hope. If you have an HR department or an Employee Concern hotline or something, feel free to call them and get him to take the pressure off. So long as you get your TPS report in and meet with the Bobs, everything will be fine.
Kymn, hope you are feeling more rested. I took an Ambien last night and I have to say that is the best night's rest I've had in a while.
Newbies, pull up a stool, let me buy the next round! Welcome, we are a strong, helpful, funny bunch here in the lounge, please let us know what we can do for you.
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Just had Taxol treatment 2 of 12 weekly treatments yesterday, So far, so good with no side effects. Waiting to see what Thursday brings. Last week I waited for the tiredness but it never came. I take l-glutamine powder mixed in juice, acetyl l-carnitine (I bought a liquid as I was tired of swallowing pills), and b-complex vitamins to ofset joint pain. So far I haven't had any.
In addition, I make this blender drink every morning that consists of two handfuls of spinach, sometimes cucumber, parsley or cilantro, one small apple, and then whatever else I have that sounds good...a few strawberries or blueberries. Blend it up with ice and a little water and drink. It is delicious and I know the spinach is good for blood counts.
Waiting for the hair to start to go. Not sure when that happens on the weekly stuff.
I too have been working out. I lost 30 pounds in the last 3 months, some due to stress, some due to cutting out white four and refined sugar, and the rest to hard work. Now that I am cute again, I would like to keep it that way.
And..can I just say...even with the uncomfortable tissue expanders, I LOVE not needing to wear a bra. Makes me feel like a kid again. I have a daughter that goes to school in California and models. I told her I was going to start shopping in her closet soon.
Twenty more pounds and I would be at my wedding weight but I am afraid the oncologist might freak out at that loss, so I have eased up a little.
I hope all those cold treatments work on hair and nails. I am personally sticking mine in bags of peas and ice. Just in case. I figure it can't hurt.
Be well,
Jill
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Lounge Lizards - my current avatar is my new pixie cut, love it! Too bad I will lose it any day
Plan to buy some more fab sunglasses and hats, too.
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Well Kymn you have inspired me! Today I got my head shaved. I could not stand brushing my hair and it coming out in clumps. I have a wig that looks nice but it is not all that comfortable. Right now I am wearing a head scarf which feels so much better. The little bristles on my head holds it in place so much better!
I cried this morning when I brushed my hair and knew it was time.
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Hugs timerdog I know how emotional it is and you do look twice in the mirror when you see yourself its likeoh right im bald lol but you adjust just like we had to with everything else. I am very proud of you just getting it done ordering you a drink who cares that its the afternoon lol. I think you look beautiful too good for you putting it as your avatar..I chickened out lol maybe I should re think that now that you are inspiring me.
Supersally I think the new due is ever so cute, you just enjoy that as long as you can. You will know when its time.
sorry cant respond to all right now have to run
Hugs Kymn
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Yes, I 'm proud of myself as well. It is all about having control and this is just a leap in the journey we all embark upon. Life is so unpredictable. Like you I have thick ( had ) long hair and it was an ordeal washing it, blow drying and then the flat iron. I have a few months of freedom and when it grows back ( with my luck grey and curly ) I'll appreciate it more.
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lol yep hoping mine doesnt come back grey and curly but prolly will too lol. I packed up all my hair products, flat iron, curling iron, blowdryer hair bands, bobbie pins, clips, lmao and put them in a bag under the bed. Out of site out of mind I say. sure have alot of room on my counter now for makeup and earings lol
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Love the idea of packing all that stuff up and putting it away, hadn't thought of that. I'll do it when it's time, too.
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Okay girls that have cut/shaved hair recently (Kymn and others!)
Did you buzz it and then shave it bald, as in (gulp) nothing...or just the buzz cut and then that will come out? I'm not sure how this works.
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I did the number 2 buzz,tiniest stubble right now will shave when it starts to come off
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Penny...great quote!! It is so sad to listen to all the problems people have with insurance and bosses and stuff I have been very lucky so far (Knock on wood).
Overy...you live in my (sort of) neck of the woods...I am in Bradford, PA...I am thinking you are about 2 hrs. from me.
Sporty, sry you have to join our group, but welcome! I have found so much info. here and such great women, it has become an invaluable part of my life and I talk about things I learn here daily. Of of my nurses yetserday commented that she has learned things from me that I have shared from here!! I don't think I know much (I am not even good at paying attn. to what is going on with me to the frustration of hubby and friends), but I think everyone on chemo for BC is on the type of meds that include hair loss. Mine was around day 17 after first treatment. I would contact american cancer society. I got a free wig there, they had a little room set up in my cancer center. Also ask about Look Good Feel Good Class. I have not touched my wig as I prefer scarves and survivor buffs (from the tv show...they make them not tv affiliated too...very comfortable!) I actually bought some material (cotton stretchy stuff) and made some by essentially sewing a piece into a tube! Your head will become uncomfortable so if you do get a wig you will def. need a liner (look up TLC on line for wigs...)
Good luck everyone hitting the chair this week. I have last AC (#4) tomorrow then on to Taxol...
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7 day after my second TAC treatment and I am B.A.L.D. The little patch of hair I had on top of my head came out in the shower last night. Those of you who shaved down to the scalp did the right thing. I had mine clipped about 3/4 inch long, and it was uncomfortable coming out, my scalp hurt til I shed it all.
Saw my oncologist today. My white count is very low. Hope this doesn't screw up the horse back riding trip I have scheduled for the beginning of May. He say we will have to have my blood tested before I'm cleared to go.
Sorry for those of you having doctor trouble, as mine have been nothing but wonderful. Thankfully, I haven't had to deal with a PS, though.
I am dealing with some mild lymphadema issues though, and seeing a physical therapist, who ordered me a compression sleeve today. The lymph node issue have been the biggest bummer of all of this for me so far. Also thinking I may have done the wrong thing by not getting a port. The nurses had ha hard time finding a good vein to do a blood draw today. Wondering how they'll find a good one for 4 more infusions. Chemo is ruining my veins fast.
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MDG-I would not cancel my vacation. Seeing another surgeon isn't an unreasonable choice. A second opinion is always a viable option. I don't know how you selected your PS to start with but you have so many things to weigh out-if you felt he was the best at what he does could you be happy or as confident going somewhere else? Maybe if you can secure an appt to tell him how many things play into the timing-the finanaces, your job, disabilty, family issues ect he will make room on the schedule.
I know how persuasive you can be with the written word-maybe you could write him a letter before your appointment. And I am sure the nurse you blew up with understands completely. I have found nothing stirs up emotions faster than being in a docs office. So sorry your DH wasn't able to be there. You did the right thing-pour it out on those of us who understand your disappointment. The biggest thing with this whole BC thing is not being able to control any part of your life-go back to the beginning and think of the advice we got back then. Worry about what is happening right now-don't try looking too far ahead. Hope this doesn't sound too preachy. Lilylady
Diagnosis: 2/18/2011, IDC, 6cm+, Stage IV, Grade 2, mets, ER-/PR-, HER2+0 -
mdg - so sorry you are having to deal with this added stress because of the ps. I just don't think doctors "get it" half the time. I really don't. Same goes for health insurance companies.
Has anyone else had really, really bad headaches since starting chemo? I keep getting these horrible headaches at least 4 or 5 days a week. It's been awful. The only thing that seems to help is a narcotic and I don't want to take anything more than I absolutely have to.
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This will be short but Migallen, I'm so sorry you're dealing with this new lump. I just had a convo on Friday with onc who was saying that if I choose to have bilateral Mx, that's a good choice but still not 100 percent - unbelievable... Please keep us posted.
Maria, I have to believe the ps will come through for you especially when you explain all your circumstances. You and your family SO DESERVE a great vaca. It would pain me to think of you canceling... Best of luck.
Bikenyc, so glad you're getting the care you need. Take it easy.
I've been kinda down since Friday's treatment - tastebuds off, no energy. Hoping I'll turn a corner soon. Supersally, love the do! Hugs to each and every one of you.0 -
djls - I've also had horrible headaches, and Tylenol just doesn't really help at all, unfortunately. My onc. said they are unfortunate but not uncommon SEs - I have oxycodone to use at night, but haven't found a solution for them in the daytime. The only thing I've found that helps at all is to remember to drink plenty of fluids - they seem to get worse when I forget to do that.
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Hey to all the March chemo chicks! You all are so much fun, again I am a Jan girl, but so very quiet on our thread. I check in with you all every so often and of course when I need a good drink.
Jules59- I am a TAC girl, getting ready for round 6 next friday. My white counts have also been very, very low, despite Neulasta. You need to time your trip or your chemo so you travel the week before, or two weeks after your chemo. I traveled between my 2nd and 3rd rounds, to do this I had to take a chemo at 18 rather than 21 days. I hope your onc will work with you. My onc worked with me, said "everything is negotable", he reminded me this last visit, when I told him I wanted to quit after 4 rounds. I love him, such a great sense of humor.
Lilylady- What great advice "don't try looking to far ahead", I know we all just want to fast forward and be done, how eloquently you tell us to be patient.
Best wishes to all you chemo chicks, check back sometime soon.
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djls - I'm getting AC first and the Cytoxan has sinus headaches/ headaches as a side effect. On Friday they did the drip for 60 mins instead of 30 mins and it seemed to lessen the effect. Having said that, it's day 5 and my head hurts. Good luck to you.
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Hey ladies...I am not sure I can keep up with everyone from today...so many posts. The lounge has been hopping. First of all thank you for the support on the PS thing. They were suppose to call me back today and of course, no phone call. Nice hu? I am being optitmistic that they are feverishly trying to find me a date.....but I know I plan on calling tomorrow. I just did not have the emotional ability to deal with it today with DH being out of town til tomorrow. So instead I worked out, had lunch with a great friend, went shopping all afternoon (retail therapy helps.....), had my weekly blood draw (levels all good except low iron) and then picked up my son. I decided just the two of us were going out to dinner, so we did. I had bought him a new Disney story book today while I was shopping..I gave it to him and we got up in my bed and read several stories. It was a great day.....will deal with the PS BS tomorrow.
On a separate note...I have something silly to share with all of you lounge lizards. You know how you were all describing your scarf look as a pirate or hungarian peasant woman? Well even though I have hair from the cold caps I too have an interesting hat look to share. To keep my hair from being pulled on while I sleep because it is long, I sleep with a satin sleep cap. Well I got a good look at myself with that hat on and I am not sure if I look like little boo peep or a cafeteria lady. I kind of feel more like the cafeteria lady. I keep picturing myself with those clear plastic gloves on to serve food with! LOL!!! So last night when I woke up for the 5th time from my 5th night sweat (gotta love chemopause...anyone else having these yet???) I got this picture in my head of all of us sitting in the lounge together looking like hungarian peasant women, pirates, cafeteria ladies and punk biker chicks (for all of you that buzzed) having drinks. I was up at 3am laughing to myself about this....I finally said "go back to sleep and tell the girls about it tomorrow". Now that my left eyebrow is starting to thin (I hope it hangs on for a while) I may start to look like a punk cafeteria lady and my require getting a brow piercing just to destract people from the fact that there won't be hair there. That's a look, hu? So on my 6th night sweat...awake again, I started thinking we should have a juke box in our lounge....if so I am putting on the song "I'm Bringing Sexy Back" by Justin T. We are all sexy, hot woman despite BC!!!!! I can picture all of us partying down and drinking with our various hats/bald heads - or in my case greasy, unstyled, gray root hair.....quite a vision in my head. Let's hope I don't have tons of night sweats again tonight....lord knows what I will come up with for tomorrow for you all. So, since we now officially have a juke box, what are you girls going to jam and dance to???? We need to pick up the pace in the lounge....don't ya think?
This is one big shout out to all you gals tonight...I just can't keep up tonight! I am watching American Idol....he he! Have a great night gals. A big hug to all you gals in the chair this week!!!! Stay tuned for my next night time vision of the lounge......
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Mdg love the juke box ...putting in a quater....I'm too sexy for my hair too sexy for my hair I much prefer it bare yeah yeah yeah .....lmao...... A round for everyone
cheers
Kymn
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HI ladies,
I've been reading but didn't have time/energy to post. I went back to work on Monday and boy, felt like a truck was thrown at me lol. Deadlines, tons of boxes on my desk, papers on my chair, I am so behind. And I thought a government job was easy....this morning I half jogged to get on the subway, got pushed, shoved and had to stand uncomfortably close to a guy who didn't have the decency to not cough or breathe in my face (ugh). He spent the first 20 mins staring at me - I was so paranoid that maybe my hair was starting to fall out or something lol but nope, he just wanted to say hi
Lily: Sending hugs, I'm so sorry the insurance company is so heartless
As if being sick isn't stressful enough. mdg: I'm sorry about the PS, I'm praying that there's a solution. I can't imagine being alone with the chemo SEs, sending hugs (and too funny about the sleep cap - I cut my hair to just below my ears, with the front longer than the back so every morning I wake up to a Justin Beiber hairstyle - his old one lol - my kids think it's hilarious)
Bikenyc: wow, I'm sorry to hear about the infection. Glad that you are ok now. Rest and take care of yourself.
Min: Hugs, hugs, hugs. I'm so sorry you have to deal with the added stress of a lump. I'm praying that it's just scar tissue.
Supersally: love the cut! You are quite pretty:)
Welcome sport, sry, overy!
Good luck to everyone getting a drink this week! Mine is this friday and guess what? Snow/rain.....ugh
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Tried to have a red beer at supper, (beer and tomato juice to you guys that don't know the drink) and it tasted horrible. Asked DH what beer he used. Coors. It's my taste buds. Can't even enjoy a damn beer!
Now finishing taxes and same DH and I got in an argument because I have ALWAYS done the taxes and I asked him to help, by filling in numbers on the planner book last night and he says he didn't hear me, so nothing filled in at 8:30 tonight with 12:30 appt tomorrow. Accuses me of procrasting "as usual". Not pretty.
So put a tune on the jukebox for me, Maria, and somebody find me a drink I can taste!
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Okay, I'm not a March chemo, but will probbly be an April/2011. I am 60 years old and dx the end of January. I had a lumpectomy and then the sn bx which was negative. I was all set up for radiation only starting last Monday 3/28, but then my onoctype dx returned with a score of 31. That has thrown me for a loop. My oncologist is letting me decide if chemo is needed since this is the intermiate range, I have known for a week and initially , I was like 'absolutely no chemo", for a 10% reduction of reoccurance, but the more I read and lsiten to my family, I think I will have to go for it
Before I thought I would need chemo, I pretty much just went with the flow and didn't educate myself (I am a nurse so do have a "little" medical knowledge about cancer, however my speciality is OB and breast lactation). I found this site last night and this blog tonight. I have been reading the posts and all the abreviations are very confusing, but I am slowly figuring them out. I will see my oncologist in the am, and will probably agree to chemo. He said I would get Taxatere (sp?) / Cytoxan once weekly x 4 weeks and then start radiation. I know my diagnosis is certainly not as bad as many so I am feeling somewhat guilty for even worrying about the side effects of chemo. I may follow with your group until an April one is started, or maybe I will start one of my own: I do have a question - what is a cold cap" Oh, my drink will be a CheeChee!0 -
Huskerkkc-
When my hair first started coming out (and I was sure it was really going to happen!) I buzzed it down to a 1/4 inch. Had this for a few days, which was nice, because I could see what I would look like when it started growing back (I would maybe lose the wig when it grows back to that point).
But when that started falling out, I looked a little like a mangy dog, so I shaved it all the way down to stubble. I look like I joined a cult, but it actually feels kinda cool and I pet my head a lot!
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Love the jukebox! I have to think of a good song. Something to go with my sexy pirate look. Hmmm....
Very sorry for the trouble with the PS. That is so unfair. I hope they work something out for you.
I am feeling so much better this week than last. No more fuzzy head or headaches. And no chair for me this week. I am scheduled on Monday.
My best to everyone. Hope you're all doing great. Timerdog, love your buzz cut. I think I'll be joining you in a week or so. My hair's so light though I'll already look bald with that. Yours looks great too SuperSally. BikeNYC how are you doing? Sending good thoughts your way. Take care everyone.
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I am doing cold caps. It is a scalp cooling system that allows you to keep your hair during chemo. I am half way done with Taxtotere and Cytoxan and have my hair. I had some shedding but nothing noticable to anyone else. I have been around people that don't know I have BC and they don't notice anything at all. Check out the thread on the Help Me Get Through Treatment board titled Cold Cap Users Past and Present. You can read all about the gals that have used them with success. Feel free to private message me..I can share more information and answer questions. I don't think anyone else on this particular thread is using them except me.
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Hey Huskerkkc - I'm a Husker too 0
