March 2011 chemo-lounge
Comments
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Lilylady - I think it's good that you cried, but I totally understand wishing you weren't doing it in front of people. I like all the great advice you're getting here about not buying in to someone's thoughts re: your next steps and quality of life. You are full of vim and vigor and WILL be a warrior -- even if you're not feeling like one today (which is perfectly fine). Wishing you peace and calm and good news in the days to come.
Hi all - I was told my wbc is "very low" - 300. I'm worried that it will get in the way of treatment #2 on Friday... I don't think it will be a problem for tomorrow's port procedure. Sorry I dont' have energy to say more right now. Thinking of everyone and sending good thoughts your way. (Welcome to the newcomers!)
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Lily - I have been thinking of you all day and all weekend. I have no great words of wisdom. Only want to let you know that we are here for you...
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Lily,
So so sorry you had to experience a day like today. You're due a good whine and cry...but from what I can tell, you sound pretty undefeatable, so you won't be down for long.
The only thing I would read into the PA referring you to the alternative onc, is that she's acknowledging there are pretty narrow limits to what they specialize in. Traditional oncology, as miraculous as it is, is still limited to treating with only a few proven regimes. Proving treatments can take decades, but that doesn't mean there aren't some serious contenders out there that haven't yet entered the mainstream (or may never as there is no financial incentive for drug companies to research off-patent drugs, herbs, mushrooms and such).
That said, there's some badass science happening right now. There's a vaccine being tested in Europe. This nano-particle thing in Michigan. And "treatable" means just that...chronic maybe yes, but treatable. Deep in my bones, I feel like we are lucky enough to be living in a time when they are going to revolutionize how we treat this disease. Hopefully really soon, none of us will have to be pumped full of chemicals to beat this thing...whatever the staging might be.
Sounds like you've been reading that book by Dr. David Servan-Schreiber? Isn't it an incredible story?
I hope tomorrow is a much much much better day. Sending all my good thoughts your way.
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Overy, the steriods are to help head off the effects of nausea associated with chemo. I take them also same schedule as you, I believe many of us do.
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Lilylady, that is a tough diagnosis to receive. It will knock the wind out of you for awhile. It took a week or two for me to begin to start seeing my situation for what it is. I have been on these boards asking for help since shortly after my dx, and everyone is so incredibly gracious and generous with encouragement and help. At one point, I began a thread in the stage iv forum asking other women to help me deal with my dx because I was almost paralyzed with fear. And I am up and down with it. When I read someone's post who's going thru some kind of injustice or down on themselves, and i can offer encouragement--when I am up to it, I will jump right in. I still have my moments but am learning to push aside my fears.
Mdg, I have already placed a hold at the library for the book you recommended to lilylady about Hope. Lilylady, there are two bc survivors women, one older that me, one younger, that i know here in my area, and both have told me to remain positive. When I was in my mid-20s, I began to try to read positive things, watch positive stuff on tv, or funny stuff. It's like a diet. You have to put it in and keep it going to reap the results. Over the years, I think this helps me get back on track when I get down, and believe me, I've been down plenty of times.
Have you given the news to your family? I know several of my family members took the news so hard I could not talk to them because they were bringing me down. I asked another family member to keep them updated. I let my answering machine take many calls because I didn't want to hear all the moaning and crying from people upset over my dx. So it's just another area in your life you want to be around people who will help you stay positive. My SIL and her 3 daughters are going on one of those race for the cure runs and are wearing pink wigs in my honor. She is someone who gets it. And it's appreciated.
Hey, lilylady, you are on my mind these days and in my prayers.
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Lilylady: I just wanted to ask how you are today...I was thinking about you all last night! Gosh I wish we were all really geographically closer to each other. I do strongly suggest the book I mentioned to someone else THe Anti Cancer: A New Way of Life. It is amazing. I have also been reading Foods that Fight Cancer. When I read these books I feel empowered to do something for myself because there is research that indicates good results for people that make these changes in their lifestyle. The author even talks about Western Medicine and Eastern Medicine. I would explore every option as well as seek other opinions. Where are you located? Are there a few other national cancer institutes you can go to for another opinion? If not, can you travel to a top institution? Let us know if we can help suggest docs in our areas or do anything else. I am near University of Michigan....if I can help, let me know. They are ranked 12th in the nation for Oncology. Sending warm hugs to you this morning.......
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Bikenyc - thanks for sharing your hotel shower story. Thought of it this a.m. while removing gobs of hair from my shower. I'm impressed that you were traveling and love your "take no prisoners" approach. You rock!
I've just ordered the anti-cancer book and am looking forward to reading it. Thanks Maria!0 -
I am up and at it this morning=the pets caught a mouse and brought it upstairs for their reward--but it wasn't dead. It ran across the covers and leaptl off the side of the bed to hide God knows where.. I am heading out the door to getmy MUGA and echo test.
Then headed to the bookstore for more cancer books. The Anti cancer book is topping my list. Also waiting for SEs from yesterday to kick in. I am allowing my mom to go with me this morning just in case.
Am telling no one about yesterday but you guys. The family doesn't inderstand anything about the tests anyway so I just told them it was inconclusive and they are going to repeat itlater. Not exactly a lie-it's never cancer til they have a piece of it under a microsope.
I am going to sit down when I get home and respond to some of the wonderful posts you all have sent out-tired of being the sucker-upper. We are all in this together-stage doesn't matter. Chemo, rads and surgery are common factors for everybody. I rpobably scared the pants off the new girls...
MDG-I think I remember you have a couple of good days before your SEs start. IKNOW you are out making the most of them
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LilyLady - sending all my love. With all the positive energy coming from people on this site I am sure we can achieve anything. Remember all the stuff they write is just average statistics - you are not average you are an amazing individual. Read the Lance Armstrong book - he had mets and went back to win the Tour de France.
Ready for my #2 cocktail tomorrow, and hoping they can use the port this time. I also look like a hungarian peasant in the headscarves, have been looking at a site with really amazing 1920's flapper style hats - might splash out on one if I can choose: http://www.etsy.com/shop/ludascrafts?section_id=5656107.
I'm losing track of everyone on the site now - Maria you are doing an amazing job keeping up with everyone. I hope everyone who had #2 in the last couple of days has only minor hangovers.
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lillady I think yesterday was " tell your pts bad news day" My new oncol (fifth one so far) decidided she was gonna stage me and upped me from a II to a III. Now decided we would do the CT and Lung scans, which I had asked for at the beginning of this and no one would do. Now a wk before my surgery we will trying to fit them in. she also tried to talk me out of surgery next wk My poor brain doesnt know which way to go. Why wouldnt we get depressed? I dont tell my family cause I dont want to have to explain it all. God Bless you all, and we will just keep fighting, as this is our new job, not one we asked for. but someone must know more than i do
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lilylady: That totally and completely sucks. But you can absolutely do this. I know I am echoing everyone else, but take control of it and do what you can by changing your lifestyle and getting second opinions and trying alternative methods. I read the Anti-Cancer book, and it does make you feel empowered.
carberry: I was moved from stage II to stage III thanks to 4 stupid lymph nodes, but like all of you, I gritted my teeth, dug in my heels, and kept moving. We can all get through this nastiness together.
I have my A/C #2 this afternoon. I am not looking forward to it but hope I can manage the nausea meds better this time. My 8-year old daughter was in tears yesterday that mom has to go through this again (and will a total of 8 times!). That sucked even more than my own anxiety...
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Good Morning ladies, wow I think I might have overdone it yesterday, worked a full day, went home and made dinner, cleaned up after dinner did homework with the kids, went on my stationary bike for 20 min changed the sheets lol then went to bed at 9 thinking I was going to crash nope took till 12 to fall asleep and woke up at 4 and just couldnt go back to sleep.sigh its going to be a long day but hey Im at work and feeling pretty normal its better than lying in bed wondering if I am going to puke or not.
Lilylady.....I have tears in my eyes over the fear you must have felt being delivered this news. I agree you should surround yourself with people who believe you can cure this and believe that traditional treatment and other treatments can and DO work hand in hand. You come here and vent, cry , laugh whatever you feel like and we will be with you every step of the way.Hugs coming to you all day every day until you beat this damn beast.
Barbra(supersally) so glad your feeling better, I need to read that book it sounds like it has alot of good info on having the right attitude and some sense of humour in all of this. And I say use the cancer card when needed Im not going to pretend I am not going through this I am going through this and I will not pretend everything is just hunky dory and normal everyday get used to it people lol.
Carberry I had a simiiliar experience, my hubby really doesnt like the scarves either and I spend a bit of money on buying the beau beau scarves that are pretied, I thought they looked nice darn it but I think in the summer they are really going to come in handy as my wig is quite long and will be hot .
Bikenyc how frustrating for you so sorry you had such a crappy night. I think when I shave my head this weekend I wil then take a straight razor to it also as I have heard that the little stubbles really start to hurt.
Maxine I too am having strands coming out and the front is starting to thin. When I came back to work yesterday I just wore my wig as that will be my hair for the next year didnt see the point in coming in with short hair for a few days then showing up with my long wig. I am shaving this weekend so I dont have to go through the clump experience I dont think I would handle that very well at all.
Countrywoman welcome and yes depression is tough and fighting through it even tougher. Its hard to loose your identity and figure out who you are on the inside instead of just the outside appereance we portray to the world at least that is what I am finding. You will have good and bad days, get a wig that makes you feel pretty
spend the money on a good one its worth itTimerdog those scarves are hard to figure out maybe you should look into the beau beau scarves too, its at www.4owman.com they are very easy and I like them even though hubby doesnt lol.
Overy you should start loosing strands around day 11 to 14 and by day 20 clumps and you prolly wont keep it that long from what I understand cause its just too hard to take, I am on the strand stage and I cut my short and have already transitioned into my wig.
Leeann we really do give chemo day much more stress than it deserves dont we. Hope your SE are miniman mine kicked in day 3 and lasted 4 days.then just lifted and other than getting tired easier I feel normal.
MDG congrats on making it through so well yesterday you bet I will hold your hair back if needed although I will be green with envy doing it lol. Hope you have a great day.
As to anyone I missed I apologize I do hope you are feeling well today and have a great day full of cancer free thoughts.As my sign off says No dress rehersal this is our lives.
Kymn
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ooops maxine I bumped into your post so sorry hope I didnt step on your toes lol. Good luck to day with chemo number 2. I agree watching our kids have to go through this with us is the hardest part.
big hugs
Kymn
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For those interested in the Anti-Cancer book, the author is putting together a foundation with MD Anderson Cancer Center to start researching (and quantifying) holistic approaches to cancer treatment.
Interesting video: http://www.anticancerbook.com/fund.html
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Have been sitting in the hospital for 3 hrs waiting for port surgery (an e
emergency pushed everything back) so am reading anti-cancer. It's SO inspiring!!0 -
LillyLady, I can feel your courage and strength right through the airwaves. You will beat this. You have the right attitude and with the right doctors and treatments, you will definitely beat this. I am feeling rather sorry for myself. I have not been "staged" yet, but I have three tumors in the breast, the largest is 6.5 cms, and at least two lymph nodes involved. Was very happy the cat scans and bone scans came up clear. Now doing neoadjuvant therapy to shrink the tumors so the surgeon can do her thing. But you're right, we're all going through this together. I had my first AC cocktail on Monday, and have been a little better every day. Stayed at work from 9 to 4 yesterday and plan to stay until 5 today, then pick my daughter up at school, go home get dinner, get the dog for a walk, take her to dance class, get some laundry done, life goes on, which is keeping me going. Trying to keep things as normal as possible in between treatments. Prayers and hugs going out to you and everyone else in the forum experiencing difficulties. We will get through this and come out cured. It is just a countdown to that. Have a great day ladies and good luck to all drinking cocktails today.
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Speaking of staging, I currently am 2b but since no surgery yet they haven't decided what's going on with my nodes other than the fact that they're enlarged... It's amazing how we can, in the blink of an eye, go from being fine to being a cancer patient or go from one stage to another. Reinforces that we have to stay I control of our destinies to the fullest extent possible. Hope everyone has a good day.
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Lilylady - I'm so sorry you have to deal with this. It just sucks. We're all here for you, and sending you positive thoughts.
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silia good luck with the port..if you every get in there.... it will be one of the easiest things you do in this journey. You will be posting us soon and say "Yahoo, that was easy"
Hang in there all you chemo-aholics. never thought I would get to this point (4weeks post chemo) and feel the strongest I have in a long time, walking and lifting sm amt of weights (my arms look like my grandmas) Also, I guess I didnt realize I had lost eyebrows, but now they are coming back, dark and furious...ha ha guess i lost more than i realized! back to plucking but I wont complain
after 3 mo. echo tomorrow, I will be going to winery for Carribean party, and yes I am going to have a real cocktail Gonna try to forget the big cancer for a couple of hours and celebrate spring. then on monday will do CT scans of chest and abd, before surgery on Thurs.
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Off to the gym to do some boxing before my cocktail this morning - think I may feel better mentally if I can hit something first!
Silia - your port will be all done now and you'll be so glad you have it
Carberry - enjoy that real cocktail I reckon you have earned it.
Kymn - gee you just keep going don't you - I feel lazy compared to some of you guys, I only have work and myself to look after - and hubbie does alot of that. It must be really hard all of you with small kids,physically and emotionally.
Quote from Lord of the Rings (watched it again yesterday):
Frodo:"I wish none of this had happened." Gandalf: "So do all who live to see such times, but that is not for them to decide. All we have to decide is what to do with the time that is given to us."- I swear all us ladies are all going to kick Sauron's arse"
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Lilylady - I am so sorry for the news you received. I just want you to know you are in my throughts and prayers too. Please don't feel like you are a "sucker upper" of any good vibes or energy. The way I see it is this, strength may be like a lot of other things, kind of karma-ish. So there may be some of us on here that have been given a burden to bear, maybe not as heavy as yours, and we have more strength to deal with a lighter burden than you do, so if we can help you to carry yours, please let us. I don't think you, or anyone healthy or with BC, can discount the power of positive energy and emotion. Whether you believe in God or some other higher power, you still have to control what you can, influence what you can, and let go of what you can't change. I think you should seek out second medical opinions, Eastern medicine, voodoo, therapy, pray to the god of XYZ, whatever. I don't know if you have the book "Crazy, Sexy, Cancer" but it is a great read and written by someone who will live with cancer the rest of her life. We will do anything we can to help anyone here, that I know.
BikeNYC - you shoulda used the cancer card, girlfriend! I would have gone down crying, mid head shave to the front desk and who knows what they might have done for you. So sorry you had to travel while doing chemo - I know you are trying to put your brave, strong face out there - but my challenge to you is to be brave enough to put the cancer card out there. You will find once you do that it was easier than you thought. I have had an amazing day and partly because I used the cancer card. Not to get free stuff or more stuff or anything like that. I went and got my hair cut into a pixie. That was my decision and I am controlling how I look - not cancer. Then I went down the street, and told the lady who has this amazing, girly cosmetic/body product/lingerie/jewelry shop that I have cancer and am in chemo. She recommended some body soap and lotion, and facial products that are non-carcinogenic, etc, etc. She also offered to show me some make-up tips once I lose my hair and eyebrows so that I will look like I have eyebrows and look healthy! How empowering to feel good about myself and look healthy!!! All because I piped up and said "I'm going through chemo. Do you have anything to help my eyebrows grow?"
Kymn - you are seriously losing your hair at 7 days? YIKES!!!! I am itching a bit, but think that is mental, not physical. We had chemo on the same day, so I'm hyper-aware that any day it could start. Hoping to go to day 21 with my fab new hair cut though, which is what my onc said. I had trouble sleeping last night too. I am almost hyper today, not sure if the glow from my great day or if some weird lifting of chemo fatigue on day 7.
Carberry - Sounds like a wonderful day - you go girl!
Penny - love the boxing! Sounds like a great exercise and stress release.
Countrywoman - find something to lift your mood. Whatever it is that makes you feel good, now is the time to do it. We have to do what we have to do, whether it's going to work, or taking care of family by walking a block in bad weather for groceries, or waiting for ports but find ONE SMALL THING that makes you happy and do it every single day. Count your blessings, whatever they may be, also. Positive energy is so important for the immune system and for the healing process. Let it wash over you like rain, lift your face up to it and embrace it.
I don't know if it's the anti-depressants talking, day 7 post chemo fatigue lifting, my retail therapy/hair cut/self-interest binge of today, but I know that I can control one big thing - my attitude and how I feel and by God, I feel good about myself! I may feel like $#@* tomorrow, but I'll cross that bridge.
All whom I've left out, keep on keeping on, girls. Tomorrow - IS- another day!
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Got my port even though it was an all day affair. Wishing I could sleep in tomorrow instead if 8 am chemo 2! Penny , LOVE the Gandalf quote. Re: depression on certain days, I've struggled with it a bit. The hair this week has left me flat but this too shall pass. My Phone is about to die so I'll sign off. God bless us everyone! Hugs all around.
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Hey all I've never posted on a board before. Wasn't sure how it worked. I started chemo on march 9th. Doing 4x AC every 2 weeks followed by taxol for either low dose 12xweekly or 4x dense dose every 2. My first onco said 12 weekly is better. Current onco said no study to prove one is better than the other. I am confused and not sure which to pick. Any advice out there?
Thanks
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Thanks for the thread! I actually started chemo on Dec 22nd 2010 and I have my last one next week...hooray! I have been on dose dense ACT. It has been no problem. I had a left mx. Trying to decide whether i should go for radiation but at 5% stat I may say no. Decisions, decisions! Looking forward to reconstruction. The chemo went by faster than expected.....the anticipation is the worst! I would like a cocktail with an umbrella please!
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MDJ: Thanks so much for the advice on the book I really appreciate in insight and always open tio suggestions, so I will check it out. I as well eat alot of fruits and veggies. Lilylady: Please keep us updated I am saying extra prayers for you as well. All our other buddies: I hope you are all feeling okay today. Have a nice upcoming weekend.
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MDJ: Thanks so much for the advice on the book I really appreciate in insight and always open tio suggestions, so I will check it out. I as well eat alot of fruits and veggies. Lilylady: Please keep us updated I am saying extra prayers for you as well. All our other buddies: I hope you are all feeling okay today. Have a nice upcoming weekend.
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Hey ladies....so chemo #2 was yesterday. I feel good...I guess the steroids help. Had a really busy day again and was gone almost all day with PT and the gym, erronds, etc.....picked up my son, made dinner, did bath time....then I got tired and it was time for more steroids so I am sure I won't sleep. My skin around my neck, upper back and jaw is senstive to touch...it started like this last time too. I did have neulasta today.. I also took aleve and claritin but so far this is acting like the last round - they way the hangover starts. I hope I am good for tomorrow so I can at least workout again since I missed yesterday. I also treated myself to my second Pandora ring...I am getting one for each chemo! My little treat to me! I did have some hair shedding start a bit today. This is 22 days after my first chemo and 1 day after second chemo. Just strands but it is making me nervous....even with cold caps there are shedding periods. I am going to stress and obsess about my hair for the next several days.....ugh!
Lily: nice mouse story....eww! I am hoping I have a few good days before the hangover starts....I will make the best of them if they exist this time around. Let me know how you like the book!
Penny: I hope today went OK. We can have a long distance hangover together in the coming days.
Carberry: I am so sorry about today. It seems like it just keeps getting better doesn't it (said sarcastically!). I wish I could hug you now...sending cyber hugs because it's the best I can do. Please keep us posted on what comes next. We are here for you...thinking about you and saying prayers!!! The drinking sounds devine.....you know, the real stuff not our chemo cocktails. I am jealous! Do take a mini vacation from cancer....you deserve it. And now isn't it funny to be excited about plucking again???? Who would have ever thought we would look forward to something like that???
Maxine: I hope all went well today....we will be hungover together in the coming days......glad I have someone to complain with!
Kymn: Hair started shedding a little...wondering if this is going to really work! I hope so! I think I am going to feel guilty if I am the only one in the lounge with hair at the end of this.......
BikeNYC: Thanks for the information on the foundation. There NEEDS to be more research on things like this. How can our medical oncologist not address this with patients at all? Seems like a sin to me.....there is so much disconnect in this whole process. I also see a holistic MD and I want to specifically discuss this book with him on my next visit and get his take.
Silia: Glad you got the book....I read a little each night. NOw I need to go back and take notes. So much good information!
Kay in Philly: I hope you are all ready for the weekend and feeling good with no hangover!! I know it's hard not being staged but just keep pushing through this part. We will get you through it all.....we are lounge lizard and girl buddies. We stick together!
Supersally: Awesome day for you! I am glad. We all need days like that......I had a great day too shopping for new make up and being honest with them about cancer...they were so sweet and made me feel so special. I got hugs when I left! I am not playing the cancer card, just getting to acceptance about the fact that I have BC. I never thought I would get there and not care about telling people so much.
Mgaines: Welcome to our chemo lounge. Glad you can hang with us lounge lizards. I will add you onto the master roll call at the top of the page. I am on a different chemo....can anyone with the AC and T help her with how they are being dosed! Also everyone welcome our new drinking buddy! This is the coolest group of chicks to hang out with. Glad you found us!
Cat123: Glad you can hang with us! We are jealous that you are almost done! Good for you - congrats! You deserve a strong drink with an umbrella for sure. Some of us are still going through reconstruction so we may be able to help with that...I have TE's right now and will be up for my exchage surgery in June. So far so good - minor issues but they are working themselves out fine. Maybe others here can help with Rads...I didn't have any so I don't know much about it. Anyone else do Rads that can offer insight?
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Argg...2 days post Neulasa this morning and feeling achy. Didn't sleep well last night. I should have followed my instincts and taken an Ambien last night. It's cold this morning, so I think I'll let my DH go out to the barn and take care of the horses by himself today. He's been absolutely wonderful, couldn't ask for more.
I've been reading the Anti Cancer book too. I'm getting so much out of it.
Supersally, I'm all for using the cancer card! We've earned it. Actually, my husband is learning to use it for me, when I'm too shy to ask for something I really need.
Sorry for the bitching. It's very early, and I expect I'll be feeling better later today.
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Had Round Two yesterday - definitely helped to have one under my belt and know what to expect. They switched out my compazine for reglan, which worked better at controlling the nausea. I took the first in the car on the way home, then got home and passed out for a couple of hours.
When I woke up, my husband buzzed my head (was shedding horribly all over everything). We had a laugh, because not long after we were done, my 18 yr old daughter (it was her birthday yesterday, too) came home - with her belly button pierced! Quite a household - needle tracks, shaved heads, odd piercings...
My 20 yr old son is home on break, and we knocked on his door, went in and grossed him out - I removed my hat and my daughter lifted her shirt. He put a pillow over his head and groaned. Got to find your humor where you can!
I had a horrible headache and bout of nasty nausea from about 7 until 11 last night, but kept everything under control by chewing ginger and snacking on trader joe's triple ginger cookie thins. This morning much better.
Hope everyone is doing ok. We've gotten to be a pretty hoppin' lounge - hard to keep up with everybody!
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Feel like a quick moan - 9:30 appt for chemo #2 - finally got home at 5:30. Tried 3 times to access the port with bigger and bigger needles - failed, had to wait 3 hrs to go for xray where he finally managed to get a needle in and squirt die in.
Final result - its not seated in the vein properly and would leak into the tissue. Went back and had chemo in a vein they managed to find after sticking my arm in hot water.
My options now are - more surgery to try the port again, a pick line in the arm (not having that its external and I cant swim for 4 months ) or carry on with the veins.For the rest of you who have ports - don't be concerned , they say my situation is very rare and all the other people who have ports think they are wonderful.
Moan over - but this stops me doing ti to my familyHope the rest of you who had it today or yesterday are doing OK. Will writ ein a more positive frame tomorrow
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