Sept 2012 chemo
Comments
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New Subject All:I have been thinking of a book--sort of an art book.Here is the proposal and why.My husband mentioned one day when going out to lunch that he had never seen a bald woman OUT. I had on my pretty wig.So here is the proposal.We invite all the September 2012, and later threads who might want to participate to have a picture made of yourselves with your bald head. Professional or amateur.The person pictured must give written, signed permission to use the picture in the book, and, the actual photographer must give written permission to use the picture in the book. We can give credit to professional photographers. Then we publish the pictures in a sort of self-published art book.Each participant can use their breastcancer.org label, or real name as they choose, but I will warn those under medicare age that some employers might discriminate against you in hiring if they know and can google and find.Each participant can use one of their on line posts to illustrate their feelings about going down this road for a short prose section .When the book is published, the profits (if there are any) go to Breastcancer.org. Maybe they will sell it on line--and I'm pretty sure Amazon will sell it on line. Once all costs are covered, maybe each participant could get one free.
I haven't let anyone but husband see me without cap or wig--mostly wig. But when I look in the mirror in the stark reality of chemo results, without lookgood/feelbetter makeup, I see a part of the real me that someway I want to preserve. There is a photographer who lives up the street who has borrowed our yard over the year for pictures. I'm going to have her come and make some pix that I don't plan to let anyone see until I am over this. I think black and white mainly in front of black.
Thought I would post the idea on several discussion threads and maybe get attorney daughter to do a legal permission slip to use picture in book. I doubt it would cost much to print 50 or 100 copies to start.
Mariposa found a book on Amazon that does have cancer patients and pix for sale. Turning Heads: Portraits of grace, inspiration and possibilities. Didn't sound that much like this, but I ordered one to see. A number of good reviews of it. I'm under the impression that most sales were to cancer patients and libraries
-I checked Shutterstock, pix for sale website. Very few of bald women
Now question is would 30-50 on here donate pix? Even if book project doesn't work out, maybe we could urge those without hair to have pix made or make pix. Shutterstock gives a very few examples.
Will query Breastcancer.org to see if they will hold money. I'm presuming we will have to pay editor. I can give a small donation to start off.
Mariposa suggested we apply to kickstarter.org. It is an amazing site that artists/creative types/ authors put up proposals for things that they want to do and the costs associated. Then people can donate money to help with the project. The person setting up the project also give rewards for donations -like for 25.00 you get a copy of the book when it is published. 10.00 you might get an e-book. Check it out - kickstarter.org. Mariposa has donated to many projects and was always impressed with the final results. She thinks it would be a great way to get initial funding.I'm thinking of a pretty simple, artsy coffeetable book of pix and the comments. Maybe all black and white. My photographer seems pretty enthusiastic.Comments? -
I think it's a great idea
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Sounds like a beautiful idea!
I'm about to start singing the steroid song for the first time ever! I'm scared! Is it normal to have to take 4 pills per day for three days? Seems extreme. First taxotere infusion tomorrow and I'm feeling nervous. Steroid insanity probably isn't going to help. Afraid of the unknown and new SEs.
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Great idea, Cindi! Mariposa, glad you are on the mend. Fight4two, I take two pills twice a day the day before and day after treatment. None the day of because I get it while I am there. I totally took an anti anxiety pill my first couple of infusions for nerves. Praying for minimal side effects for you!
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Cindy, your idea touched my heart. I would participate and help in any way.
Fight - the steroids are very important part of the treatments, so don't be afraid. I take 5 pills the night before my taxol treatment, then 5 right before infusion, then 4 for 5 days after to help with my joint/muscle pains. I get a bright red face and chest and think they bloat me some, but it goes away when I stop taking them. Good luck!
Feeling loopy today and weak, but otherwise ok. Mariposa, wish I could give you a hug for all you have been through. We will be onto surgery soon! -
Just took my first two tablets and they were teeny!! Guess I'm still used to my prenatals.
Anyone get thru taxotere without lglutamine, vit b, and icing? The nurse seems to think I should just take motrin.... although I've read some ppl say to avoid ibuprofen??
Getting so anxious!! -
Fight4two, just finished my fourth today and haven't done any of those...two more to go...hope I didn't just jinx myself! Cindi, can't stop thinking about your idea..so beautiful... and I already have orders
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If you are willing to help with the photo book project, please private message me telling how you can help.
Preliminary ideas for needing help.
1. Donating picture. (Will need permission of person and photographer).
2. Editorial help (Anyone with publishing experience here?)
3. Legal
4. Fundraising (donating or raising)
5. Consulting artists? Mariposa?
When I have about 20 names, I will e-mail the Breastcancer.org board and see if they will hold the money and support the project. We probably should say up front that should something keep us from publishing, donations would be kept by Breastcancer.org.
I looked at the kickstarter site and their projects can't be done for a charity (???)
Have done extensive research on Self Publishing previously for other projects, and I do not think we are talking about much money here. For those who aren't familiar with the term, the old way of publishing was that an author had to convince a publisher to put up the money and decide to publish to earn a profit. Self publishing (Old style kin to vanity publishers), has the author put up the money and a print company takes the manuscript pages, camera ready, prints and binds the books. Most will get ISBN number, list with Amazon, and do little or no help with selling the book.
The old way was that the author ended up with boxes of books in the garage to sell. The new way is that the print company only prints a few books at a time as they get orders (new technology). You can pay for converting from word or other types to special book type, or for proofreading, or editing, or cover design, and even for marketing. Prices range from $2500 to $10,000 depending on what help you pay for and number of books and whether hardcover or downloadable.
I am very concerned about the privacy of these pix. I believe that if the pix is stamped with a copyright stamp, that someone would have to get permission to use. You would be giving permission to use ONLY for the book project. (Any suggestions for names for the book appreciated). The books would be sold.
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Cindi: great idea! I'm in.
Mariposa: I really hope the antibiotics kick in real soon. How crappy. Sending good vibes your way.
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That's too bad about kickstarter not allowing for charity. I have been looking around to see if there is any other platform like that one, but there doesn't seem to be one. I found one site called helpersunite.com that does solely charity based projects. It is different than kickstarter, and unfortunately doesn't have the same following... but it might be a good place to look at.
I agree with self publishing. Amazon has a very good platform (from what I have heard). I think that every woman in the book would want a copy- and family members would want copies - etc:-) Maybe a part of the proceeds could be used to buy additional books to be donated to community breast cancer organizations - so that they could share them with their members:-)
Anyway Cindi, count me in for helping!
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Chemo day Wednesday, I really don't want to go. So sick and tired of it I just want to SCREAM!! Just tired of it all, felt so exhausted past few weeks and I think I am starting to get sick on top of it. - just venting.
Amy, I have horrible nose bleeds, if I don't use Vaseline or some type of ointment everyday my nose will bleed like crazy. -
Amazon is selling a book 3D Greek Myths, a 96 page (10 x 8 x .2) artsy book published by Createspace, the Amazon Self Publisher. (createspace.com) This is a book of, it looks like, black and white photos. Will query them as to the cost of printing the book. This is sort of what I was thinking about.
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Kids, we all feel that way sometime. Hang in there. This too shall pass. Hugs and NO SE.
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Hi ladies I have a question for you guys .has anyone who has had a cold did your glands swell up ? My right gland hurts . Started when I started my cold and it still hurts .
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Cindi I will help in anyway I can . Great idea
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Thank you all for the answers on the numbness.....I see my MO tomorrow, hopefully can get some answers.
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Cindi, the book idea is fabulous. My work is marketing/fundraising, so I have some experience in that area and will gladly help in any way that you need.
fight4two, I was advised to use paracetamol or cocodamol for muscle and joint pain during Taxotere, not any of the ibuprofen related products. I also iced my finger nails and toe nails every time, starting 15 minutes before and ending 15 minutes after the infusion, and as advised, painted my nails with about 4 coats of strengthening nail polish, followed by a dark colour. I've had absolutely no problems with neuropathy and my nails are as healthy as they've ever been, but just ache mildly a day or two after chemo. My chemo nurse said that since they've been advising this, they've had no-one with nail problems and much fewer instances of neuropathy. I've also read a few articles on line that suggest this is the best method to combat these problems.
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Cherioo, I did have swollen glands with a cold while on chemo for a close to a week.
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Cherioo, same thing on the glands. Mine seem to swell if i get near someone sick. They are more painful than prior to chemo.
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New article today on Fox regarding Chemo Brain!
www.foxnews.com/health/2012/11/27/evidence-chemo-brain-verified-by-researchers/
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Below is a response from Createspace on the costs of publishing a book of our hairless heads.In a message dated 11/27/2012 5:49:11 P.M. Eastern Standard Time, info@createspace.com writes:
Hello Cindi,
Thank you for your interest in publishing a title through CreateSpace for your non-profit organization.
Since we are a self-publishing company, it is up to our members to decide what price their titles sell for, so long as that price is equal to or greater than the publish-at rate for that title.
The publish-at rate protects us against publishing books below our costs. This rate takes into consideration all of the printing costs incurred by us associated with your title. You may view the minimum publish-at rate for a particular title during the title's setup. The minimum publish-at rate will appear below the list price field.
For a 96-page book with a full-color interior, the minimum publish-at rate would be approximately $9.47. For a black-and-white interior, the minimum publish-at rate would be approximately $2.69.
There is also the option to purchase copies through the CreateSpace Member Dashboard for an even lower price, and you can distribute these copies on your own. With a Member Order, you pay just the fixed and per-page charges plus shipping and handling. For the same book specifications, you could order full-color copies for approximately $7.57 (not including shipping and handling), or black-and-white copies for $2.15 (also not including shipping and handling).
We primarily manufacture paperback copies of books, and members can opt to publish their titles digitally through Kindle Direct Publishing. However, we do offer a Hardcover Upgrade service.
With this service, we create a hardcover from your paperback printing files within 1-2 weeks; however, we currently do not offer hardcover distribution, meaning any hardcover copies could not be purchased through your CreateSpace eStore or Amazon.com, as a paperback would.
The Hardcover Upgrade includes a one-time setup fee of $99 per title and you can select 60# white or cream interior paper and the following binding options:
- Case-bound laminate – hardback book where the cover image is printed, laminated and bound directly on the boards that make up the cover of the book - Library Cloth with Full Color Dust Jacket – hardback book with a durable, navy cloth cover and a detachable, printed outer cover Once the Hardcover Upgrade service is complete, you will be able to order hardcover copies at a wholesale rate, which includes fixed and per-page charges. The fixed charge for each copy is $6.50 and an additional $2.00 for the library cloth with dust jacket option. The per-page printing charge is $0.015 for a black and white interior. If the book has any color images or text within it, the book is considered full-color and the per-page printing charge is $0.15.
I do sincerely hope that you find this information helpful. If you would like assistance or clarification on this or anything else, kindly inform us and we will gladly assist. We are available 24 hours a day, 7 days a week you can reach out to us by clicking here:
http://www.createspace.com/Support
Did I solve your problem? Let us know here: https://www.createspace.com/Special/L/YourFeedback.jsp
Best regards,
Daniel CreateSpace Member ServicesAs I read this, we can publish a paperback in black and white with costs per copy below $2.70. I would think we could sell this on Amazon for around $7.50 to $10.00 and make a nice profit for Breastcancer.org. Breastcancer could probably sell it for less. I don't want to start unless we have at least 30-50 volunteer donors (of pictures). I think we can post this info on several threads, but particularly each monthly thread of those starting chemo.
Oh yes, just black and white--or color?
Our costs other than printing the books, should only be putting the book together, deciding on the cover, and putting in whatever text we decide.
My idea was to just put in several pages of quotes from the discussion threads discussing the hair loss or cancer or whatever. Am open to other suggestions.
If there is a psychologist in the croud, I think just thumbing through such a book in a doctor's office or at home would be therapeutic--sort of "all those did it, I can too." What do you think?
My photographer is doing me tomorrow. She is very interested in the project.
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Just got back from my MO. My white count is 53.33, which is 5 times higher than what it should be at it highest. According to the MO, this is the reason for the pain, and not the Taxol. Suggested vicodin and B6 for the numbness.
Hope everyone having a good day.
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Cindi,
I applaud your ambition to create this book. I think it is a really great idea and a great potential money maker for Breastcancer.org. Whereas I would love to view such a book, I'm not sure that I'm up to being one of the subjects, having nothing to do with not having hair. I just don't like being the subject of pictures!
So....Kudos on the idea and I hope it takes off. Best of luck!!
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Cindi, I love the idea. I would not mind putting pictures of me in the book. I need to figure how to upload on here. I have pictures on Facebook , just can't get them on . Cindi just let me know what you need . I am not working right now and I am bored out of my mind . I do the kids stuff but sick of just cleaning .
Mouth sores, can't believe all of a sudden right before I am done with this shit my tongue and on my right side of mouth hurts . Not sure if the cold triggered it but it sucks. Dr called me in Keflex for my lymph node and ear ache . Just want this done. Sorry I am complaining it is just getting harder and harder to deal with. I love Christmas so much and I know that it is not about gifts but Jesus I just am have g a hard time this year . Thank god for all of you -
I haven't thought all the procedures through. I wasn't suggesting that anyone post pictures here although on the hair thread, they have been posting (which is not near as public as being in a book. I think that donors must mail pictures, quotes, and permissions to someone (might try to get one of the lawyers in the family bound to secrecy) to receive them for usage in the book only (or maybe Breastcancer.org) Then, each picture would have the donor's screen name (or a different choice) put on the back and quotes attached. Then all the pictures and quotes will go to the editor or editors. The editors won't know the names of those in the pictures. With artsy lighting and poses, you might be hard to identify. and yet make an impact. I told my photographer (who offered to do it for free), that perhaps no one would ever see the pictures until after I die.
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Cherioo, you can help. Make a list of those volunteering to help and private message them with the below list of how and ask them to private message you as to how. Have them tell you when they have pictures but not to send them anywhere until we have the address and system set up. Then private message me the statistics on how many will do what. Donors will become our organizing group--perhaps to get free books or discounts on books.
Preliminary ideas for needing help.
1. Donating picture. (Will need permission to use in book of person and photographer).
2. Editorial help (Anyone with publishing experience here?)
3. Legal
4. Fundraising (donating or raising)
5. Consulting artists? Mariposa?
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Butterfly, did she say why the elevated wbc count? Just the Taxol? And why does it cause pain?
Are you feeling better. Is there a way they bring it down?
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I have been exhausted for the past several weeks now wide awake on steroids. There is no rhyme or reason to this entire process. I have the chia head going on right now, chemo tomorrow so the little stubbles on top will fall out again next week. Hope everyone else doesn't have bad SE with their treaments this week.
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kidsandlabs, I am on steroids too but here we get them just before chemo, not the night before. I had my last A/C at 4 PM or so and expect to have my usual feeling like a zombie on steroids but at least I have never had any nausea/vomiting.
cindi I am interested but not sure if being Canadian will be an issue?
Now I need to get into my jammies and into bed with a hot water bottle. It is not getting any warmer in Vancouver though no rain for 4 days!
Marian
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Hey Jojo great article.. I knew I wasent loosing it!!
Well like everyone else here I gain ten pounds .. So it's time exercise little extra ... Will not over do it . ... Feeling great this morning .. Going for hercepton ... Does anyone blood pressure drop every time they get their hercepton ...or any small chest pains?
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