August 2010...anyone starting chemo besides me?!
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StCards-what's going on?! Clemens...that's what! They are talking 21 months in jail...holy smokes! Thanks for the reminders also, always helpful.
DebJ: something is bothering you about that conversation with your company. Be careful what they mean by "extended benefits" etc.... as sometimes, and there are huge settlements in landmark cases, their "words" mean seperation. George Bush rewrote the American's With Disabilities Act to INCLUDE cancer patients and to lock up loop holes. That went into effect over 1 year ago but if you don't know about that, companies will definitely try to take advantage of you. Do you work from home? Just wondering b/c it certainly easier to get back to work under those circumstances. With the germs, the changing of the seasons next month and the grotesque lack of fresh air in big, corporate buildings, I would caution anyone trying to get back. TAC, as my onc explained, the SE's do have an "accumulated response" as Sweeney so eloquently pointed out. My onc told me you get more sick each time. We are all different, however, but the one thing we all share is a severely depressed immune system during chemo so tread carefully. Familiarize yourself with ADA and "ask" questions like "what does extended benefits mean? Am I still considered an employee?" etc... make sure to ask.
Which brings me to my next point: Where the hell is all the money being donated to all these cancer causes going?! I just called a local cancer assistance program to find out if there is anywhere bc patients can get a discount on a treadmill as mine is about on it's way out. The answer is NO!!!!!!!! I have not heard anyone, anywhere on this board not to mention my father or BIL get ONE DROP of any assistance from any cancer blah blah blah unit. You know what she tells me? We provided a Reiki information session....I interrupted and reminded her a lot of cancer patients don't need REIKI sessions but rather they need you to cut contracts with "Life Fitness" so we can get discounted equipment. People need money, not bs education sessions. I worked on Wall St so I know the questions to ask so I started pressing for balance sheet details. She says 80 cents on each dollar goes back to the patient. I will let you all know what I find out when I see their annual report she is supposed to be sending but if they gave $300K in support last year, this means they raised $360K....I bet she is full of it!!!! Of course I have not received a copy of the annual report yet. This would also mean their annual, total salary base is $60K!!!!!!!!!!!! I am sure that is HER income.
There is such much graft and robbery with all these illnesses. It makes me sick. I wonder if they ever feel gross for taking in so much money and doing NOTHING for the patients unless they live in a refrigerator box. My friend who has 3 kids and was really struggling called some place for assistance on copays when she had cancer and they gave her like $15...not joking!!!!! She had to fill out like a book-like application as well.
Let me know if any of you have received what can be considered "assistance" from any of these cancer organizations that raise funds on the backs of our illness.
Your Fearless Leader never stops working for you!!!!!!!!!!
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Adey: we are sisters from another mister, that is why!!!!!!!!!! Did your Chinese food arrive yet?!?!0
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Liz, while you are on the subject, I was wondering where the studies are showing 6 treatments is better for the *patient* than 5 or 4. I haven't been able to find that data.....I would like some reassurance that the duration of treatment is optimal.
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All went smoothly with getting my port in. I'm just a little sore. They said keep the tape on until Monday, but that I could shower tomorrow.
Sweeney: Love the new picture.
Liz: The only cancer organization I've been involved with is the local Amer.CancerSoc. They gave me a wig and a bunch of information. And they do the "feel good, look good" classes for free. There are other services they provide (I can't remember what all) that I didn't need. I agree that you have to be careful and investigate the organizations you are giving to in order to be sure they are making prudent use of their funds. But I also know how hard it is to run a non-profit. I used to be the director of a Meals on Wheels program and it was very tough to pay salaries (which were paltry, believe me! ) pay for our building, vehicles, all the expenses, and get our clients fed. We were always scaping pennies and looking for money.
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Hi LadyinBama, we are port pals, I got mine in yesterday!
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Hi all--so today was hair buzz day and I was feeling OK until the sound of the razor--then the tears started. Had lots of moral support there with my Mum and Sisters but was still hard. I had previously picked out a wig and did wear it home. However, it did feel SO WEIRD--like I was in a spy movie incognito--and another thing--it is hard to wear sunglasses with the wig as the wig is close to the ear area. Now I'm sounding like I was dressed up like a spy but....
Once I got home, I took off the wig (it was very hot--doesn't help that it was over 30 celcius today) and I put on some scarves that I purchased (not from China but from US) and they did feel great. I think that the wig will be used only when I am not feeling great or 100% confident with where I am going. I think the scarf/bald look will be my choice. I posted a new avatar-with scarf though
Thanks for the idea for drinks from everyone. I am actually feeling very good--no side effects--I will take it for what it is worth right now and enjoy this time!
Rachel
p.s. I still haven't received my 0.05cent wig yet from China but with my luck it will probably be better than the one I just spent a fortune on (thanks for my company insurance plan!)
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My hair is falling outif I touch it. I am feeling sort of stuck, I don't want to pull it all out. ut I know I have to let it go. I am feelign really sad about this. I am four days out from round two now and htis is when I felt sad last time too. No nausea, praise to God. Just sad. And treary. I have a brand new grandchild 6 days old and can't really go over there like this. Oh yuck.
Love you all
Ginger
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Hi all. I'm thinking healing and hopeful thoughts for all of you. I'm also thinking VERY grateful thoughts to Lizzy, or fearless leader ( who I hope knows she doesn't have to be fearless for our sakes!) for keeping this list going. I have no idea how much work or energy it takes, because I am clueless about how it works, but I just know that you, Lizzy, have given us all an enormously valuable gift!
I have a couple of questions for the group. Have any of you experienced tooth/teeth sensitivity since beginning chemo. I haven't read anything about this, but I have a few teeth that just hurt a little. I'm not sure if I'm having toothaches from like a cavity or loose filling or something, or if it's just more sensitivity. Or maybe it's really my guilty conscience getting me back for not having gone to the dentist before chemo started!
Well, okay, I guess that was just one question.
As for the chemo bag thread... I'm not sure if the original question was about what to take on infusion day, or about things to carry with us all the time. I'll just comment on the latter. I carry a small make-up bag inside my usual bag. It contains: toothbrush (extra soft, made for children, so small) and sample-sized toothpaste for when I eat out, anbesol and q-tips for when I need help with mouth sores, hand sanitizer, the smallest size trash bags for vomiting, (I have these planted in my car too), small bottle of Biotene mouth spray for dry mouth, eye drops for dry eyes, sunblock in case it's been too long since I put some on but find myself outside, bandaids and a very small tube of Neosporin in case I get an owie, a small box of animal crackers for nausea, and finally some sanitary wipes for going to the bathroom because when we pee this stuff out, especially with certain drugs, it can irritate the skin down there, even lead to infection. Oh and of course anti-nausea or any other relevant meds. The sample section of drug store, and for some reason Bed Bath and Beyond are really good places to look for this stuff. Hope that helps a little.
For those of you struggling with nausea, first of all, I am very sorry. I don't know what's worse, feeling nauseous and vomiting, or feeling lonely. I thought I'd mention one drug that hasn't been brought up yet: Kytril. It's a strong drug, like Emend, stronger than Zofran, much stronger than Compazine. It, like Emend really works best if you "stay ahead" of the nausea and take it before you feel nauseous. I was sent home with Emend, Kytril, Decadron, and Compazine. I took the Emends for the day or two after Tx they recommend (don't remember how many days), but besides that I found myself taking the Kytril to handle my nausea (and I didn't always "stay ahead" of it, but it worked anyway). For me it worked better and longer than Comp., but didn't make me drowsy or cause se's such as constipation or dizziness nearly as bad as Compazine. That's not, by the way, to say it didn't make me constipated -- all the anti-emetics and painkillers do, for me anyway, but it wasn't as bad with Kytril as with Compazine. Anyway, just thought I'd mention it for those of you who are taking all the anti-emetics they've given you but are still having nausea -- might be one to ask your doc about.
Lisainglem: I've been using an electric razor, just a cheapy I found at a Walgreens I think, and it works great. I have lost most of my hair (and as of two days ago my eyebrows and most of my eyelashes too), but some patches are still there. The electric razor works great to make these unnoticeable.
Lizzy: You asked about the length of time for infusions. I was there for 4 1/2 hrs. However, I am on different drugs than you, and different regimens take different amounts of time. Also, I did not meet with my onc that day, and many people do.
Calamtykel: You mentioned in your post that you had had heart "irregularities" in the past, but then went on to describe palpitations. It just made me wonder, because arhythmias and palpitations are very different things. Did you have both? I have a history of several cardiac issues, but the one that was of particular concern because Adriamycin and some others in that class can cause it too. I had an arhythmia called a QT prolongation. It's just what it sounds like the Q wave and the T wave of normal sinus rhythm are too far apart. There may be other cardiac problems that would affect your eligibility for certain drugs, like an abnormal echo or muga that showed actual muscle or valve problems, but I just thought I'd mention that a Prolonged QT is a big warning flag for certain drugs because the drugs themselves can cause it, and it can lead to a condition called Toursades de Pointes which can be fatal. Not saying this to scare anybody, just to share what I know based on my own experience. I had to settle for a less aggressive regimen because my cardiac history is so sketchy, and it makes me very nervous. Really scared, in fact, that I'm not doing enough to treat the bc adequately. There were a number of reasons why my onc wanted to put me on a more aggressive plan, but she just couldn't. My only really helpful way of dealing with this fear is to tell myself that being bc free for the next 40 years isn't going to do me any good if I drop dead of a heart attack in 5!
Lizzy: This isn't really what you are talking about with LIfetime Fitness, because I know your goal is to keep exercising, but I thought Id let folks know about something I learned from my gym (Lifetime). If you are not feeling up for exercising, or want to do lighter exercise from your home, but you have a membership with Lifetime (and I would suggest that anyone in this situation ask whatever gym they belong to about it), you can put your membership on a temporary hold, but once you are better, you can re-activate your membership without paying any of the start-up fees. It's a good way to save money if you're not planning on using your gym for however many months. This arrangement does require a letter from your doc. I would actually suggest that folks ask their gyms if there is a special rate for people suffering from an illness that, under a doc's advisement, would benefit from exercise. Who knows, maybe it's time to use the Cancer Card. Better than Visa!
Omaz: You were asking about studies pertaining to length/number of Tx's. I can't point to a specific study, but I will tell you about a website that is very useful for finding studies on anything cancer-related under the sun. It's the website for the American Society of Clinical Oncologists (asco.org) You may get to it also through cancer.net -- that is their patient site. Hope that helps.
Good luck to everyone starting tomorrow, and for everyone else, my fingers are crossed that you all have se-easy days!
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Rachel: what a cute pic!!!!! You look great! I think you should have saved your nickel!!!!!!
Omaz: I don't know what the case is for more chemo. I have no idea. For me, I actually want as much as they will give me which is clearly a case of Stockholm Syndrome! You could spend 3 days reading about why more or less on the internet and probably still not have a consensus. I did read something interesting about bc cases being traced as far back as the 1300's. Of course, women were dying, quite young, from mysterious lumps in their breasts as the story read and that sure sounds like bc to me.
Ginger: Sorry about your hair. Do you have a scarf like Rachel? Babies love bright colors.
Lady: I appreciate your response and I volunteered with meals on wheels a few summers in college so I totally understand but that was a "real" not-for-profit meaning every day you had to put trucks and food on the road. Some of these organizations just seem to suck up money. For instance, I went to this real "A" hole of a ps when I was hunting for one. While in his "cosmetic lobby" some idiot was in there going on about her not-for-profit to bring clean water to the world. Meanwhile she is buying $200 worth of lip plumper, was asking what her tab was ($650 w/out the lip plumper), and talking about her looming trip to Paris. Those are the ones I am talking about. I also do not want anything free but what i don't understand is how come discount programs could not be set up for us like at Walgreens for cancer meds and at Pro Form to buy exercise equipment or Nike for sneakers etc... These huge corporate sponsors get such huge write-offs for altruistic programs they are so incredibly likely to get involved. I don't want to change the world but would like to know why bc and other "c" patients don't have discounts off drugs already set up or discounts with companies where they can get healthier etc.. like exercise equipment without having to live in a refrigerator box to qualify!
Liz
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Thought I'd show y'all a pic of me having fun the day I got shaved. Yes the mohawk went away, but it was fun while it lasted!
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Wherria: I appreciate your information on the gyms but "Life Fitness" is the manufacturer of high end treadmills that are generally purchased by gyms. They start at about $3000 I believe. I have a home gym for 2 reasons: 1) I don't like to be aggravated by buffoons that think b/c u r in a gym this also means you r there to talk to them and 2) I find these express gyms dirty. They are the growing trend, these $10 a month places, and gone are the "health" clubs from my area at least. No more pools, saunas, steam rooms, seperate spinning rooms, fantastic aerobics classes...places where I did not mind spending $70 a month to be a member. We need MORE Planet Reeboks!
About your teeth, I have read a number of places that either chemo or neulasta, as teeth are bones, can give you toothache type of feelings. I am in the exact same boat as you as I should be getting to the dentist before it starts. I have been so recalcitrant as my dentist is over 1 hour away, 1 way, and there are so many appts etc... plus I am sure he will want me to come back for the work etc... and, btw, this is me making 100 excuses!!!!
Liz
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thanks sweeny. I am trying to sit still and let this pass for now. I was just really surprised at my boss's reaction because all along I had intended to return on intermittent basis, but see it seems to be a problem to manage in her eyes now..........tomorrow I will get with HR and find out my real options, and decide. Like you say, the results of this chemo are acculmative. I don't have small kids anymore, just grandkids and you have my great admiration for keeping up with your family. I need to work to keep my insurance. It's all about the benefits and I thought I could enter back on intermittent leave without problems. Just a little miffed at her reaction. Every thing else has been so supportive and caring.
I have never been without a plan. Not that they always worked the way they were suppose to, but I have always been one of those people who had to have the plan, and all this is playing havoc with my mind,
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I was just looking at livestrong.org and it seems like they have some areas for financial help. I just found the site so don't know very much. Has anyone checked this out?
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My zofran is actually a generic and is very cheap. Only cost me about 70cent. Ask your Doctor to write it so generic can be substituted. Hope that helps. I have had a rapid heartbeat and some breathlessness that I have associated with being slightly dehydrated but it starts getting much better once I don't feel so dried out. I am going next week to onc and am going to talk with him about this also so always check things out with oncs. Lol,gin2ca
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At look good, feel better I did get some ideas for scarf tying. Somewhere on the web are the directions for using the bottom 2/3rds of a tshirt, and twisting it around your head. Since it is in a tube it feels really secure. They also dressed it up with scarves etc. I'm thinking 2 black and two white that can be decorated and dressed up might be all I need. Cut the tshirt off under the arms, put the tube over your forehead, crossing in the back. Hold the back look and roll/twist then bring up over your forehead. You get the turban with the added twisted wrap.
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Omaz: when do you start chemo?
Rachel: Did you hair start coming out after the first FEC treatment? You've only had one, right? I'm curious since that's what I'll be on too. You look great in your scarf. Your beautiful smile is the same with or without hair.
Wherria:Thanks for sharing the mohawk pic. We've got to take our fun where we can find it.
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LadyinBama, I am scheduled for next Tuesday 8/24. TCH x6. How about you?
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Omaz: I don't have a start date yet. I see my onc on Tuesday and I guess we'll get a schedule going. I'm FEC x 3 then Taxotere x 3.
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Okay, I'm gonna get gushy on all of you. Are you ready?
This is just plain old shitty sometimes. No one wants to lose their hair, or explain it to their kids or grandkids. No one wants to be stared at with pity. Or fear for their future. No one wants to vomit. Or have a plastic tube sticking out of their chest. No one needs crappy bosses or unthinking neighbours, or thoughtless people. No one needs cells that cause havoc and upend your life to the enth degree. No one should ever have to worry about work or money while they battle this. No one should have to tell their mother, sister, best friend that they have breast cancer, because that is the nastiest moment of all. Or feel guilty about dentist non-visits. Or buy 5 cent wigs. Or weep.
But truly- I am moved to tears reading this board tonight. Each and everyone of you are really helping me. And we're helping eachother. Totally random women from all over the continent with just some stupid wonky cells in common. And I'm actually coming to rely on you and your wonky cells. You're wonderful. All of you. And if I could I would teletransport you to my house tonight- we could all have a glass of red wine, eat a bit chocolate. Make room on the comfy couches for those not feeling so hot. And have this convo in our pjs with our bald heads and (wherria!) our mohawks. Liz could start the conversation.
Sleep well, my friends. For that's what you've become.
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Rachel your scarf is adorable. You really look cute. I have a huge head and am worried about the scarf balancing out my hips:) Library lil
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Ahh Sweeney, you made me cry. Sleep well, this group means so much to me too.
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WHER - I LOVE your profile photo!
Ginger - I'm getting my hair cut very very very short tomorrow. I may have her shave it down. I'm taking my BFF with me - this is what she said.
"Kel - you and your hair are taking a short vacation from each other. You need a break from one another and you will be reunited in the near future - never fear."So that's how I'm thinking of it.
Still praying for the Lord to give me courage tomorrow though! 0 -
Sweeney - do you realize that in a few short lines, you just totally summarized the entire BC experience? That's pretty amazing.
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Hello Gals, I got through the 1st tx TCH today YAY only 5 more to go !! I feel fine but was an extra long day 4hr. of poison through port plus the 1 45 min. drive. I am not taking the steriod tonight I couldn't sleep last night because of it and I want to sleep tonight, so I will just take it in the ams. I did all my usualy thing this evening and even went grocery shopping so so far the 1st day was just along one. Nite Gals
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Sweeney---Your post made me cry---in a good way. I feel like copying and pasting it to people I know. You are wonderful. Thanks.
Ladyinbama---My hair was not really falling out but it was feeling as though someone was tugging on it--Nurse said that is a symptom of the hair getting ready to fall. I HAD thick hair and the Nurse said that when it did fall--it would be everywhere. So I took control of it and got rid of it. Believe me, it wasn't easy and I cried...but I am glad I did it and feel good with it bald and with the scarves. The wig----we'll see....I'll hold judgement until my 5 cent wig arrives
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Rachel You look so great in your scarf picture! I think that losing our hair forces all of us to show off our beautiful faces, so it is not all bad!
Wherria You look great too! Love the mohawk, good for you for really having fun with the hair loss! Also it is funny that you should mention the tooth sensitivity, I was just noticing that today. I'm not sure if it can really be attributed to chemo since all I have had so far is a quarter of a dose of Taxotere but I am having pain when I chew on one side of my mouth. I actually did go to the dentist in June for x-rays and cleaning and then had 2 cavities filled last week so I'm not sure where this sudden pain has come from.
Calamtykel Your friend's quote is great, I will have to keep that in mind when the time comes for my hair to go, we are just "taking a short vacation from each other". Also I am just like you about getting motion sick - not usually in cars but on planes and I also don't like roller coasters and other wild rides. But continuing to worry about the nausea will only make me nauseated so I'm trying to relax and just wait to see what happens!
Liz I hope you don't take offense but I really enjoy your rants! You are so right about the questionable charities and I guess the best we can do is look for the ones that are legit and encourage our friends and family to consider that when choosing where to make their charitable donations. I agree with LadyinBama that the American Cancer Society does seem to be a good one, if you contact them they may be aware of what charities and companies do offer support to bc patients.
DebJ I hope you are able to sort something out with your work. I think for many of us, if we are feeling up to it, going to work at least part-time can help keep our spirits and energy up. It may just be that your boss thought she was being helpful by encouraging you to take disability leave, maybe she thought you were feeling pressured to keep working?
Sweeney I think you just said (very eloquently) what we are all feeling. Thank you for saying it! The red wine and chocolate sounds good right about now. I hate that we are all going through this but at least we are going through it together.
Hugs to all of you and all of your wonky cells. I'm off to watch Project Runway before bed!
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This is a great group. The posts make me laugh out loud and well up with tears.
My problem now is I have ABSOLUTELY NO IDEA HOW TO GET THE COURAGE TO DO THIS. I can't stand the thought of not having hair (I did get a really nice wig but feel sick everytime I look at it on the stand). I don't want to feel sick. And by the time my 8 treatments end it will be December. I just cannot, cannot imagine this and don't know what to do.
And then the idea of being followed up forever and praying it doesn't come back somewhere else and be a much worse problem.
I'm sorry. I feel so despondent right now.
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ZachsMom- you'll do it. It just doesn't feel like you will right now. But you'll do it. I could tell you yoga, or acupunture, or meditation, or Cup of Bleeding Soup for the Breast Cancer Soul or whatever. But here's what REALLY helped me. I started to cry really, really hard one day with my family medicine doctor (GP), he's an amazing man, and he said to me, "Mara (that's my real name:), my job is to take care of your mental health throughout this. And I'm going to make a suggestion that I hope you will take seriously. I think a low-dose anti-anxiety medication will go a very long way to making you a stronger person right now to help you help yourself and your family."
I trust him. I believed him. And I was desperate. So I'm on 10 mg of Cipralex and it has made a WORLD of difference. I stopped waking up at 3am terrified of the what if's, I could look at my kids and not have to choke back tears while pouring milk on their cereal, I could look at my husband and trust him when he said we'd get through this. My doc described the medication as acting for me like "water off a duck's back". He was right.
Your posts are so sad right now. You should go to a family doctor you trust and tell them about your fears. It's their job to help you manage this part of the disease. And it's a disease and your mind is just playing it's awful, creepy, despondent part. It might need some medicine too. And that is perfectly OKAY. XO Sweeney. P.S. Keep letting us know how you're doing...
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Zachsmom, Hang in there, you can do it , we all can. I did cry when my hair started falling out in big globs, but I called for an appointment and got my hair shaved that evening and I am fine with it. I put a scarf on and went to the store this morning. My real concerns are about damage to my internal organs, but I have put that in God's hands and lots of people are praying for me and all of us.
Sweeny, Loved your post. Thanks.
Well wishes to the newcomers and to us all. Good Nite, Coleen
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I have to thank you all....when I started this thread I was just looking for some chemo friends for mutual support through, what will hopefully be, the most challenging period of our lives. They say there are no accidents and I don't think there is any accident that all of us came together on this thread. I just think it is wonderful and it is supportive far beyond my wildest dreams. Thank you all for being soo good to each other and making this thread a resounding, supportive success.
Sweeney: Your eloquence is profound this evening! I have complimented you before but you have outdone yourself tonight! More to your point about GP's. I have the greatest GP in the world. In fact, if it were not for his encouragement, I would not have even gotten the ultrasound, never mind mammogram. As soon as this started he talked to me as well. He discussed the idea that perhaps I, too, might need something to help me through this. He did give me a small dosage of xanax...I think it is 5 mcg or something like that. In any case, much like you, Sweeney, I decided I would use it when I needed it. When I wake up in the middle of the night tossing and turning about many of the things that our pal Sweeney said we should not have to worry about, if I cannot get back to sleep I do take one of those and they help a lot. I have never been on that type of med in my life but, at a time like this, no one should hesitate to have a heart-to-heart with your GP. I just wish I could do a "Dolly" experiment on my GP and replicate him so you could all have such a wonderful doctor in your life
Get something to help you through if you need to. Don't hesitate as it helps a lot.Finally, when I called the American Cancer Society about a ride to the neulasta shot as I am 1 hour roundtrip to the hospital and I am also afraid I might not be feeling well enough to drive. I am fiercely independent and will ask my boyfriend or family etc... but if I can get it done on my own, that is what I prefer! In any case, someone calls me back and leaves a message basically saying because we are 100% volunteer organization there is probably nothing we can do for you but call us anyway and we will see!!!!!!!!!! Someone has got to hold their feet to the fire....where are all these donations going?...no more rants today...I am tired!!!!
Your FEARLESS Leader!
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