Anyone Starting Chemo Jan. 2010?

Hi girls. Wow, it sounds like lots of us are having a hard time emotionally. I'm not even one week out from my last chemo, and can't believe how I suppressed so many emotions throughout this phase of treatment. I thought if I could just get through chemo, I'd be OK with everything else, but it's not that way, is it? Just the word "chemotherapy" is enough to scare the pants off anyone, so I guess we put on a brave face and try to appear as normal as possible to the rest of the world. Then chemo's over and you think about what you just went through and why. I'm so sick of looking at my bald head and thinking "cancer patient." It's still unbelievable. I look at my daughter, who will be 4 in two weeks, and am SO sorry that she has the experience of having a mom with cancer. That she ever had to see her mom sick and bald at such a young age, as I'm sure so many of you can relate. And her mom secretly worrying about the cancer returning, and her losing her mom prematurely. I made fish for dinner tonight and she said it was sad that I was eating the fish because I took the fish away from its mommy and the fish just wanted to be with its mommy. Yep, tug on those heart strings, cancer. 

To you girls scared of surgery--really, you'll get through it just fine. I think the worst part is the drains. One thing I found helpful--if you are given the OK to shower, get a string to hang around your neck (I used one for reading glasses) and pin the drains to the string. Then I wrapped myself up in saran wrap and topped it all off with Glad Press and Seal. That kept the bandages and the drains completely dry. And, you'll get really good at wrapping yourself up in saran wrap for when you want to surprise your husband at the door when he comes home... 

Susan G. Komer needs to be investigated as to what they are doing with our money!

John Robbins: Greed, Cancer and Pink KFC Buckets

Susan G. Komen needs to be investigated: John Robbins: Greed, Cancer and Pink KFC Buckets

They have those walks all over the country and where does the money go??

alright Mslrg & Pumpkinsoup, now you are just making me cry. Hearing your kid stories makes me sad for all of our children that they have to watch their moms fight cancer and may not evenf ully understand why. I hate cancer for doing this to my kids, for taking away a part of their innosense, for having them see me sick and weak, and for putting fear into their minds that I could be taken from them. People are always telling me that my kids will see me as strong for fighting cancer but I don't think at their ages(8,6 & 18 months) they are capable of seeing this and I'm not sure if down the road, years from now they will look back and see this experience differently. Honestly I hope they don't remember any of it b/c I fear the bad memories will outweigh the good ones from this period of time.

Vegasdiva: congratulations!!! you deserve to enjoy this time and embrace being done with treatment. you seem to have a good outlook and I hope when i am all done i will also feel "cured".

VegasDiva - Congrats on being done with treatment.  It is so great to be done but also a weird to be.  Yes, almost everyone expects you to be back to normal but I don't know what normal is.

I am being "De-ported" today.  I am looking forward to not having this thing in my chest.  I also met with gyn surgeon yesterday to discuss the details of my hysterectomy on the 4th of June.  I am having it done via the da Vinci robotic device.  The recovery is supposed to be pretty amazing.  She said she knows one person who went snow skiing 2 weeks post surgery.  One of the hardest parts of this surgery is totally a vanity thing.  There will be two surgeons and the other surgeon is a man who is the father of a girl my daughter went to school with several years ago.  They were on the same soccer team.  I am not too thrilled with the idea of lying there naked on the table with no hair (anywhere), no boobs, and 30+ pounds overweight.  I don't have much choice but to deal with it.  We live in totally different parts of town so are paths won't cross.

Mslrg - I do think that the Komen/KFC alliance is a strange combination.  I am doing the 3 day as well and feel that my money is going to a good organization regardless of this decision.

Blarney

I'm right there with you. The Jan chemo sisters talked about this about a month back. Since I've been diagnosed with cancer, I'm very cynical about the  big money making "cancer industry". It is in no-one's best interest to find a cure for BC. (No one except us- that is)  just think of all the people who would be out of a job if there was a cure for BC. I too am walking in the 3 day, raising a lot of money for Susan G Komen and hoping that some of the money will actually go toward finding a cure. Yes the KFC/SGK partnership is an oxymoron.

youngmom & mslrg -- The kid thing. I know it's not my fault that I got cancer, but the guilt I feel over the fact my daughter lost six months (so far) of her life with her mom being "normal" is weighing on me heavily. I agree with you youngmom--I don't know if they'll able to interpret the experience as their mom being strong. I don't really know how she'll process this. I hate that cancer has changed my girl's childhood.

mslrg--I'm so sorry to hear of your cousin's little girl. I have a family member who donated a kidney to another family member 20 years ago, and both are doing well. The recipient has had type 1 diabetes since he was a teenager, but he's doing OK, thanks to the kidney transplant. I can't believe there are two matches in your family and no one will help the little girl!

issymom--how are they removing your port? Please let us know how the experience was. What a great feeling to get rid of that thing!

vegasdiva--Congratulations on finishing radiation! How great to be done!

As for me, I start radiation for 5 weeks the second week in June. Then, I'm having the other breast removed prophylactically, since it came out BIRADS III on my MRI last November, but BS talked me out of bilateral. This all means that I'll have another TE to fill, and can't have the TE exchange until at least January 2011 because of the radiation. And, all this treatment is done 3 1/2 hours away! UGH. I live with my parents while I have treatments, and I feel like a middle-aged teenager when I stay with them! One of the pitfalls of living in a smallish town--limited medical care. 

ER positive girls- anyone start their Tamoxifen yet- did you doctor go over the drugs that inhibit CYP2D6 that should be avoided while taking Tamox.?  There is info on them out there- I haven't gotten my mine yet- but I'm hoping the doc goes over all that. 

vegasdiva- congrats on finishing up- back to the real world for you...so they think it's real!  Hey did you ever decide on Latisse? 

issy-congrat on port removal!  

NKRUN- I found a recipe by Bobby Flay on Foodnetwok - it's Oven Roasted Cauliflower with Turmeric and Ginger...good for us to eat.  And I myself will add BLACK pepper because it helps the turmeric.  Maybe you'll want to look it up.  Also - i thought you are still in process of making breast decisions and I just finished reading a great book for rehad exercises during ever treatment and surgery.  It's called Staying Abreast by Annie Toglia- I just finished reading last night and took notes because yesterday I had my tissue expander exchange and a breast lift reduction on the other side and want to exercise the right way.  The book works in stages and let's you know at what week to move up and so.  It's a good book - because I live in a small town and couldn't really find anyone who specializes in breast cancer exercises- maybe you live somewhere with better resources - either way I thought of you when reading posts about exercise.  My legs still get super stiff after sitting....it's only after walking my 2 miles I feel pretty good and loose- even my upper body feels better. NK- you going to starting taking aspirin - everyday for inflammation as well?  I am.

KFC- breast cancer fund raising.  I have to give my 2 cents as my family owns and operates 6 stores.  After having cancer I question a lot of things........and Susan G Koman....well you have to look at the whole picture.  Are they doing more bad than good....Can all things that we think cause cancer be avoided.  Do they stay away from plastic water bottles, are their t-shirts organic?  We all have to make our own decisions.   KFC is raising money for breast cancer.  You may have a problem with KFC because it makes people fat, causing heart problems and so on.  Well it's not KFC that's making people over weight or helping them with their heart problems- it's people.  KFC was the 1ST fast food chain to go total NO Trans FATS.  They carry healthy food choices.  KFC carries Kentucky Grilled Chicken.  I honestly believe anything in moderation is OK.  Now I also will say - now that I have had breast cancer- I won't eat any fast food for a long time- because I am HIGH RISK.  We all have to be smart.  I won't use water plastic water bottles, or microwave with plastic. 

And 1 more thing - I've worked for my family business for years and KFC has been a good living for my parent's who are wonderful people.  Thanks to KFC we have wonderful insurance that made my treatment less of a worry.  We sell KFC because it's good food and it reminds us of family meals.  Remember the old days of bringing home a red and white bucket of juicy KFC?  Well families only did that on special occasions- they weren't eating out as much as they are now.  Also the franchise owned stores- like my parent's - my parent's are the ones collecting the money for the donation.  Our stores sell the buckets and we give the donation.  

I do agree we need better funding for other areas like - chemo brain, hair loss, and after affects.  Starting our own foundation is a great idea, but finding funds isn't always the easiest thing to do.  Susan G. is doing their best to find funds for us and I'm grateful.  I hope the money is going to the right place....if not something should be done.  Shouldn't it be public knowledge where the money is going...if not that should be a red flag.  Until I know for sure- I'm just going to be grateful.   

I had my exchange yesterday as well as a lift and reduction and although I don't like looking at it- it went well.  I found it hard to go into the operating room- no hair- no make-up, jewelry and 15-20lb over weight.  I was thinking gee what are they thinking and why would they think I give a crap if my boobs look good....well the only girl thing I did was keep my toe nails painted!  As little as a thing it was it made me feel pretty and when one of the guys took my socks off he said"NICE" and I felt even better- like they knew I was a girl!

GRAMO you out there?  thinking of ya!

MichelleNJ- thinking of you as well. 

Have a great day girls!

HUGS          

HI Everyone,

Yesterday I had my 10th out of 12 Taxols - 2 more chemo treatments to go!  I was also "unblinded" for the Avastin study where I could have wound up in group A - placebo; group B - 10 treatments during routine chemo, or group C - 10 routine plus an extra 10 cycles post-chemo.  I was hoping not to be in either A or C.  So, the good news is that I am in Group B.  I've received the 10 cycles of Avastin while doing the A/C and now the Taxol.   So, I am pleased and relieved today.

As for Susan G. Koman, there are several ways to figure out who to give your charitable dollars to.  First of all you can look up any charity's Form 990s on http://www.guidestar.com/  The Susan G. Koman website lists all their Form 990s so you can go directly to their site and get more updated information than in guidestar.  The reason a form 990 is important is that it contains vaulable information for any donor.  In the case of Koman, all the grantees are listed - how much they got, organization's name and location and type of grant.  It also lists compensation for all key employees earning over $100,000.  In the Koman case, according to their Form 990 2009 filing, there are 17 executives earning over $100,000.  With all benefits, the CEO earned $558, 601.  The base salary was $406,691.  I consider that on the high end for a npo CEO - but there are others who earn a bunch more (Several hospitals, universities, boy scouts CEO and others).  I am appaled, however, that the CEO travels first class and chartered flights.  Not necessary and somewhat inappropriate - to me it shows poor judgement and some personal arrogance. However, often a CEO and the board of directors take a "private corporate" view of the leadership role.  I think that is a mistake.  Passion, commitment, and awareness that every dollar possible should be spent on mission should define top leadership.  A decent wage (which is six-figures today but not half a million) should be okay.  When I worked for Marian Wright Edelman (Children's Defense Fund) she only made $90,000 while most folks in her position in DC were making several hundred thousand annually.  I still admire Marian today - she's the real deal.  She traveled coach.

There are "watchdog" sites that rate charities on performance.  That performance is generally based on their financials and some program parameters.  The best known is Charitynavigator.org  They have Koman listed with 4 out of 4 stars - which means they consider it a well perfoming charity.  See http://www.charitynavigator.org/index.cfm?bay=search.summary&orgid=4509  Interesting to read the comments section - many other donors are complaining about CEO compensation and the highly visible marketing campaigns and corporate partners.

Another watchdog is the Better Business Bureau which reviews Charities,  see http://www.bbb.org/us/Charity-Reviews/  I couldn't find Koman on this site.  You can make an inquiry and they'll get back to you with information.

American Institute of Philanthropy rates top charities (not all charities) and Koman is listed and got a B+ rating (not bad and not the best rating). National Breast Cancer Coalition Fund got an A rating.  I looked at charities I had worked for and found the Children's Defense Fund (I was COO there for seveal years) and they rated an A, Girl Scouts USA got an A- (probably because they have an 18 month reserve - they were pushing higher reserves when I was a council executive director).  Funny, I would consider the Girl Scouts to be better run internally but both are great charities. For AIP, their website states: "Groups included on the Top-Rated list generally spend 75% or more of their budgets on programs, spend $25 or less to raise $100 in public support, do not hold excessive assets in reserve, and receive "open-book" status for disclosure of basic financial information and documents to AIP."

Watchdog groups help make you feel comfortable about the uses of your donated dollars.  But it doesn't help you match your personal preferences with chairty focus. My son is working to raise funds for his Koman walk in the fall.  I wouldn't have picked Koman for my personal charitable support.  I am not philosophically aligned with the group, I did contribute to his walk because...he's my son.

 Hope this helps. Love to all of you.

Pat

dgirl24,

Thanks for defending the KFC position. It is nice to get both sides of the story. 

As for soy, I try to avoid it but find it sometimes hard. Yes it is in everything including many of my favorite Kashi products. I switched from soy to hemp milk and stopped eating tofu. 

I will have to check out the Bobby Flay recipe for the cauliflower with turmeric.

Still struggling with the surgery decision. I had an onc appointment this am and she is still pretty convincing that a lumpectory/partial mas is the way to go. I've been told to not get to hung up on my decision because things may change when the BS actually gets in there.  I have a friend who thought she was getting a lumpectomy but when she woke up from surgery both breasts were gone.  

Nope I don't plan on taking aspirin daily for inflammation. I have really low blood pressure and my docs in the past have cautioned against aspirin. 

I have not started taking tamoxifen yet. Thanks for the watchout

 MSLR- glad you are going to talk to the social worker.  Be honest with you I'm a little worried about ya.  I hope you can find an amicable solution in your work situation.

Pat-thanks so much for the wealth of information on charities.

Issymom-Congratulations and thanks for sharing the term 'deported" love it.

DANG - I JUST RE-READ MY POST-I MUST STILL HAVE CHEMO BRAIN, MY SPELLING AND GRAMMAR IS TERRIBLE!!!!!!!!!!!!!

Tamatar: so glad you are doing okay. That is some crazy stuff.

dgirl: congrats on your exchange surgery.

issymom: Whoo hoo!!! so excited that you are officially done with all of this chemo crap.

Actually I was going to post a question to all of you who have had expanders and see how your experiece was? I am still torn between the free-flap surgery and the implants and my PS said he needs to know by the end of this week if i want to have my surgery in july as recommended. So incredibly stressed out about having to make this decision and am terrified that I will make the wrong one. If anyone could, please share what made you choose implants or flap and how has it been since?

tamatar-so glad you are feeling better- you poor thing!  I bet it was huge getting those out- what a relief!  Tam- chemo brain- I still have that problem...lol.  stinks

Billion- love that blog and love that book.  I'm going to try the magic chicken soup...think that's the name.  And I also want those chicpea burgers.  I am planning on trying 1 recipe a week and making a soup every Sunday.  Let me know if you try and of the recipes and I'll d the same.  I'm trying really hard to set up a real easy routine (meal plan) for my breakfasts and lunches.  I'm also trying really hard to incorporate all the fighting cancer foods from AntiCancer..ya know green tea, turmeric, apples, carrots, cabbage, broccoli and so on.  It's exhausting but if I don't put a plan together I'll never do it.  Are you doing radiation?

youngmom - that's tough because we all are so different in ways.  My situation was I had to decide before I knew the status of my lymph nodes.  I was told that if I did do the tissue expander with implant and needed radiation and something went wrong I could always then go for the "hybrid" (transflap) procedure.  It turns out I do need radiation and I have an implant in there....so if something goes wrong with my Rads I can always go for the other procedure.  See if I had trans flap and something goes wrong- then what take more tissue from somewhere else?  Now you do know that implants will need to be replaced after 10 or so years?  Something like that made me want the transflap and forget about ever having another surgery.  I roomed in the hospital with a girl who had both breast done with transflap and it was painful from what I heard but now she is all done...  as it turns out she ended up having positive nodes (that weren't suppose to be positive) so she is going to have radiation in the end.  I don't know if that helps.  Also I just read about life restrictions that they don't really tell you about.....maybe you need to evaluate what restrictions both bring.  I believe with transflap you can't do certain things with your abs?            

If you get TE- I myself didn't like mine- but now that I have my implant I feel so much better.  Good luck to you.

Dgirl24 - Thanks a lot for thinking of me and for the detailed information on the exchange operation. I have it this Friday and my pre-surgical tests were not that good. Yesterday they called me for a Neupogen shot. Your reassurance helped.
About Tamoxifen, my oncologist said she would be ok for me to start it 2 weeks after exchange(that is 2 weeks before radiation ), but she is not sure if the radiation oncologist will be ok with it. Does anybody have Tamoxifen and radiation in the same time? I will look for that Cauliflower with Turmeric recipe too. It sounds really healthy.
Pagowens - I'm really happy you were in the B Group and got that Avastin without extra treatment weeks.
Tamatar - I'm glad you are feeling better, but what a pain to start again with the reconstruction after you got almost to the end of it.
YoungMomof3 - Good luck with your decision making. And don't be terrified that you will make the wrong one, because you will feel what is right for you.
11Billion - Thanks for the links and Friday enjoy the good feeling that it is your last chemo and you don't have to come back in a week.

I didn't post lately because I was on a short vacation and my daughter's college graduation. The ceremony was great and I was very happy for my daughter, but overall it was a hard experience I'm still recovering from.
It was my first traveling after I got diagnosed and I just realized how hard is to have to eat out for a week and eat healthy and organic and no soy and all the things we were taught in the books and we all discussed about. In my before BC life I kept my weight under control, with a like Atkins diet (couldn't I have been more wrong?) In Miami I had a hard time choosing the right food and feeling good about it and myself. And after a few days there, I found out that my dad was diagnosed with lung metastases from the colon cancer he had about 2 years ago. We are the only ones in the family that ever had cancer. I try not to think about it now, and I can't really talk about it too without becoming paranoid. I can't sleep even with sleeping pills.

Hi Everyone, I am just so emotionally spent I don't know what to do with myself. I saw the social worker today and she tried to help me strategize how  could manage my stress level when I go back work on Monday. I felt more like crying than ever. It's such a daunting thought to be back to work when I feel so ill and so weak. When I'm at work, I never get lunch breaks or any kind of breaks--sometimes it's 4:00 before I eat my lunch and 7 before I leave. I get there at 7:30 every morning. I just can't do that right now. From there, I went across town to my PS for my exchange pre-op. She gave me a lot to read, plus four, yes 4 pages of things I can't eat/drink/take two weeks prior to surgery, includng stuff I've never heard of  not being able to ingest before surgery, like Chinese food, cauliflower, broccoli, black mushrooms, fcertain fish, and walnuts!

My oldest son, who's graduating from 8th grade next week was supposed to receive two awards this evening at a special "invitation only" awards ceremony at school. The teacher emailed me to come, and we stayed for the entire two hours and he was never called up. The ceremony ended and Adam just sat there, the only kid in the auditorium with no award. He was totally gutted!  This is the same kid who had such a bad time with bullying at school last year (because he's on the autism spectrum and kids were mean and beat him up) that he stopped going to school altogether from last April until this past January. We just got him liking school again, and now this!!! I was hoping I could see the awards ceremony because I will miss his graduation--my boss won't let me have the morning off to see him graduate next Wednesday.

Tamotar. sorryabout your TE experience--I feel I'm having a similar  problem. My skin is stretched so tight over my TEs that I have started to get stretch marks and they hurt all the time. My port/cath is also swollen and sore. I had to place a gauze pad over it today because my shirt on it made it hurt. If I didn't have to go back to work sosoon, I could have had both problems taken care of on Friday, but because of the mean spirited people I work for, I have to wait another month in pain.

And yes, I worry about my cousin, who will probably die and leave her little girl motherless because her own mom and sister won't donate a kidney. I am just so disgusted and sickened by that side of my family. I wish there was something  could do, but being an anemic cancer patient doesn't make me a good candidate even if I was a match.
I think I am going to call my PCP and ask for antidepressants because I am truly about to gooff the deep end!