Anyone starting Chemo in August 07?
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Hi ALL
Nash,
so sorry to hear about your dd's coach...
I miss you, too, Lilith... It IS a good thing that we don't feel the need to come here as much for support.
HUGS
Harley
P.S. I was on the local Myrtel Beach NEWS last nite... I did an interview at a beauty salon, that donates wigs for cancer patients and does the Look Good Feel Better.... It was really cool...
Harley
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OMG ladies,
I cannot believe that I was last on this board in March!!???? But as one of you said, life just keeps coming at us whether we're ready or not.
Life at our house has been pretty stressful since last November. DH has had some severe back problems with all of the accompanying pain. We seemed to have spent 70% of our time recently in and out of doctor's offices and treatment centers. He has had some small improvement but not enough to make him feel like he's regained any real quality of life. Back surgery is of course always an option but one that so often does not bring favorable results. So, for us anyway it will be be a last resort thing.
It was so wonderful to read that all of you are doing well and feeling well.
lilith, my apologies dear for not knowing that you had lost your mother. I hope you and daughter are doing as well as anyone could expect and I really hope you can get the time off this summer.
Kaye...the baby's arrived! Didn't I tell you how wonderful it would be? Especially when you can get a 3 hour nap every day! LOL Our only grandchild is also a boy and at 9 is still running us ragged.
Nash, glad to hear of the good MD reports my dear. Where are you taking the kiddies this summer?
Jackie, so nice to get an update with you. Please tell your friend if she has a change of heart, we're here for her.
Harley, you go girl and find the money and go get what you want...you've earned it! Keeping my fingers crossed for you.
DeAnne, all those kids and boys to boot....anyone nominated you lately for 'best mommy of the year?" He is one lucky kid!
Ladies, I have to tell you my secret. I have big time hang-ups regarding facebook and twitter and any of those forums due to a couple of bad experiences. Anyway, I didn't understand what happened when I innocently went (by request) to a friend's page or wall (or whatever you call it) and right after got some really scary emails. So...I don't do it because I don't understand how to prevent that from happening again. Sounds pretty old fogey I'm afraid, so now you all know my secret!
Billons of hugs to all,
June
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Hi June - Good to hear from you! I'm sorry about your dh's back. Growing old isn't whats so bad, it's all the pieces breaking that just sucks! I know you guys will make the right decision on surgery/no-surgery. Do you know yet what his pain is due to? Chronic pain is a real drag.
I recently went to celebrate our son's Marine Boot Camp graduation and tripped on an uneven piece of cement at the hotel and laid myself out pretty nicely. Pulled a muscle in my rib (the side I hold the grandbaby on - AWK!) plus landed on my knee. My GOOD knee. So whatever. At least it wasn't another dx, Right? Everything in it's proper perspective.
Nash & DeAnn - On the way home from the graduation, we stopped off for lunch at Stone and I thought about you guys and when we met there....good, good memories!
AND, Harley - That Marine band they had that played for the graduation and the Colors Ceremony that morning WAS KILLAH! Very impressive - did you say your DH plays Trumpet? I forget. I know there must be several bands across the nation, but I was really impressed with the quality of musicianship....like everything else Marine, It screamed Precision. PERFECT.
Lilith, Jackie...hugs to you both. Hope the new jobs (and everything else!) are working out!
June, don't have to apologize about your Facebook Phobia. You're not alone. There are settings you can adjust, but the security things keep changing, and staying on top of it is irritating.
Love all you Ladies,
k
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Hello, girls. June, I'm sorry to hear about DH's back. I've had several friends who have severe chronic back pain, and I know how hard it's been for them. I'm sorry that you guys have to go through that, and I hope he can find some relief soon.
Well, we've kicked off summer vacation, but unfortunately not in a good way. The first day school was out, DD was diagnosed with early anoerexia, and I'm struggling with how to deal with it. We're going to be seeing a nutritioninst, but I'm waffling on how much therapy to get her in to. She doesn't want to talk to anyone but me, and I do want to encourage her to be self-sufficient and learn how to manage her emotions on her own.
She's a perfectionist and performs at a very high level, be it academics or sports. So you combine that with the cancer/death stress, and you get an eating disorder. I don't think she's bad enough to warrant a lot of intervention at this point (she eats, although apparently not enough given her sports involvement--the problem is more obsessive exercising and irrational body image), so I really don't know how to proceed. I'm going to be talking to the pediatrician again tomorrow, so we'll see what else he has to say.
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Yikes, Stephanie....that's a tough one. My experience is somewhat distant and limited at that, but the one case I did experience (albeit from a distance) turned out to be surprising (to me). It was a 16 year old daughter of missionaries to Papua New Guinea. She was very tall - 6 feet - and and blonde (model-esque by American standards) and surrounded by the New Guineanians who in comparison tend to be much shorter and darker. The counselors were trying to determineany of the REAL root of the issue, and they (the daughter included) came to the conclusion that the main one was an obedience issue. Her parents were suggesting that she do one thing, yet she didn't want to do IT, she wanted to do her own thing. (understandable 16 year old thought processes - how else do they become independant with out trying their own ideas out?). She capitulated, and by the time she went back to Papua New Guinea, she'd put on enough weight where she looked healthy, and she had a new thinking process firmly established in her mind, and renewed relationships with her parents. It was pretty dramatic to witness. I assume every case might be different, but there is hope - I just thought I'd pass it along to you.
PLEASE Keep us posted... we love that little karate kid.
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Thanks, Kaye. I will keep you guys posted. After pondering this over the weekend, I'm becoming a little concerned that perhaps there is an underlying medical problem causing the weight loss, and that doc was a little too quick to call it an eating disorder. She definately has a distorted body image, but she eats. Apparently not enough to maintain her weight, but she eats. What is concerning is that she's showing signs of fatigue on the basketball court and at the dojo, looks pale, is nauseous a lot, etc. I guess the first step will be to see if she'll put on weight under supervision of the nutiritionist and go from there.
Ugh. Sick children make bc look like a walk in the park.
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Nash - Oh sick kids is no good. So sorry to hear that. I wonder too, if sometimes the doctors are a little quick to diagnose such things. She's obviously a very active girl, and it's very easy to not get enough calories. I remember when my husband was still in high school (yes, we knew each other in high school), he was fainting sometimes because of not getting enough food. It wasn't that he wasn't eating, just that he was so active he simply wasn't getting enough calories to sustain him. It's easy to think you've eaten enough when you actually haven't. I tracked my calories for over a month back when I was trying to gain some weight back after chemo, and it was a lot more challenging than I thought it would be to get enough to put on weight.
I hope the nutritionist can give you some good advice. She's such a smart girl and she obviously had two parents who are very much in her corner, so she's got a lot going for her! Hugs to you and her!
DeAnn
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Hey Nash,
Just a quick line as I'm halfway out the door to work this morning. This is probably a silly question but I feel I gotta put it out there. Have they drawn labs and done an electrolyte panel? If intake is down it's almost an automatic that fluids are also. Low sodium levels cause an extreme drop in energy and reduce focus and concentration in daily living activities. More later my friend, you hang in there and I think you're right to look at at possible metabolic causes.
hugs and more hugs,
June
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Thanks, girls.
DeAnn, interesting about DH. Sounds very similar to DD's issues.
June, you're absoultely right about needing labs, and good point about the low sodium. Dr hadn't ordered any labs, but when I talked to the nutritionist on the phone, she said they absolutely had to have them. So I talked to Dr. last night, and he's ordering CBC, chem panel, thyroid, etc. I'm not sure about the electrolyte panel. We're going to go pick up the orders and get the draw today, so I'll check.
Thank you for the support. You're the only ones I can really talk to about this. Big hugs to all.
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Hi Ladies....
Oh no...Stephanie...I am so sorry to hear about your daughter. I know you will quickly get to the root of the problem. My heart, thoughts and prayers are with all of you. XOXOXOXO
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Hey Nash, just checked in to see if there are any news on your DD. Keep us in the loop, will ya? I am thinking of you guys.
Hugs to your family.
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I just popped in to see if anyone was here, and OMG! it has been busy, with updates.
I am having a fundraiser, Pizza N Putt, in Sunset Beach, for my Strides walk. It will be on Aug 20th, and I am getting busy getting it together. It is only my 1st fundraiser, and my 1st bc walk but if things go well, I may do it again next year. I know, I must have lost my marbles....
I'm glad to read that everyone is doing well. Sorry about the back problems... that sucks....
Kaye, I know that baby is SO much fun!!
Stephanie,
Sorry to hear that your dd is sick. Hope the drs. can get to the bottom of it, and I don't have to see her on Mystery Diagnosis. I love that show! Once, I even figured out what the problem was....
so.... just call me Dr. HARLEY!! LOL
See ya later
Harley
P.S. I am meeting a friend for drinks tonight. Gotta go get ready for HAPPY HOUR!
TGIF everyone... I gotta work tomorrow.... UGH....
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Hey Ladies,
I need to do a survey for the American Cancer Society and was hoping you all would help me out.
I'm going to start volunteering for them in their "Road to Recovery" program. If you're not familiar, this is a program that offers any breast cancer patient an opportunity to be linked up with a mentor who has had bc and has had the same type of treatment and surgeries that are planned for you. This information should have come from someone at your oncologist's office/ infusion lab/ radilogist's office/ or even your primary care physican. What I need to know is if any of you were given information regarding this program at any time during your treatment.
The AMC society is finding that despite huge effort and funding, there are very few patients that are taking advantage of this program. In ALL of Atlanta last year, they had less than 50 women request a mentor. They are trying to determine the actual reasons for this. Do most women just have other strong support systems or is the medical community just not cooperating out of indifference or defensiveness? If it was something not needed, then why would we have all of the threads on cancer.org and all of these women reaching out to each other?
Please let me know what your experience was if anything.
Thank you all so much and 'mucho hugs' to all....
June
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June, I can't remember if anyone directly told me about ACS's programs, but I know I saw literature in the waiting room. It definately wasn't something that was emphasized to me, though.
Young Survival Coalition has a similar program (which I found out about on-line, no info at cancer center), and if I were the type to want to talk to a live person, I would have gone through them b/c I was under 40 at the time.
The reason I didn't use that sort of outreach program is b/c it just doesn't suit my personality. I find that in general the info given out through these sorts of things is very generic, and I can find out more through my own research. And I prefer the emotional support I get through bc.org and from my family to the support I would get from a volunteer.
That being said, I think it's a valuable program that would benefit many women. I think that probably there isn't more participation b/c people don't know about it.
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Harley, hope you had fun at Happy Hour!
RE: DD. We go see the dietician this Friday. She weighed herself this morning and has lost another 2 lbs. I don't understand. We're tracking her calories, but obviously she's not taking in enough. And this is with supplementing with Ensure, b/c she has trouble eating larger quantities. I'll let you know how the appointment goes.
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Hi All!
June, I did know about this program, and I asked for and received a mentor as I was in "information seeker" mode from the very start. I thought the more people I could talk to the better, and I thought it might be nice to talk with somebody who had the same diagnosis as me and to find out how she handled things. Unfortunately. I didn't really connect well with her. She was very nice, but it had been 11 years since her diagnosis, she didn't have the same type of breast cancer I did, and she didn't remember what kind of treatments she had, so I didn't really feel like there was much she could offer me in terms of support and information. I got a lot more of what I was looking for by coming here to Bc.org and a few other places. I agree with Nash, that the general kinds of advice were things that I could get easily from other sources. Maybe if she had invited me out to lunch or something we would have hit it off, but it never got that far.
I have, however, thought that I might like to be a mentor because I do stay on top of all the newest information, and I've learned so much about cancer prevention that I could maybe give somebody helpful info. Honestly, I wish I knew 3 years ago what I know now. I would probably have done some things differently.
Nash, so sorry that DD is struggling with the weight. To be honest, I've never known anyone who actually got good results from drinking Ensure. It is basically sugar water with some vitamins, oils, milk protein, and flavoring. Most people I know continued to lose weight while drinking it. I'm not sure why, but maybe because it is so heavily refined, it really doesn't supply the nutrients the body needs. However, I know she needs to get more calories in, and drinking something is a good way to do it. May I suggest smoothies? (I know, I know! Here I am again with my green smoothies. Sorry if I'm sounding like a broken record!) Actually, it doesn't have to be a green smoothie, though its amazing what a little introduction of greens does for your body. Here's a recipe that I have been able to feed to even my totally picky son, and it will provide a lot of the same things that are in Ensure, but hopefully be a lot tastier too. I don't usually do the oil or the hemp protein in my own, but for this purpose, it will really boost the calorie count and nutritional value.
1 large banana or 2 small ones, 1 cup of baby spinach, 1 cup of orange juice (fresh squeezed tastes best of course, but boxed is OK. You can use other kinds of juice too if you like), 1/2 cup or so of frozen blueberries, 1 Tablespoon coconut oil or flax oil, 1 Tablespoon hemp protein powder. This would be almost 350 calories, but would provide more bioavailable nutrients than the Ensure. It has loads of vitamin A, vitamin C, calcium, potassium, and other antioxidant goodies. Maybe worth a try?
I hope the dietician can give you some good advice too! Hugs to you both!
DeAnn
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Hi Ladies,
June - re the Mentor, I did receive a phone call and literature offering the program to me. I didn't utilize it because I just felt no need for it for two reasons. One - I'd already found bc.org and realized that was what I wanted/needed. And Two - for anything else not directly related to cancer, my support system of gals in my church is great. We've known each other for over 20 years - grown old together in a sense. I have met a few women locally - two through bc.org, and two through random events and really, DeAnn is right, there is either a connection or there's not. So there you have it. On the other hand, I have heard about a friend's mother who utilized a local support group and both she and her daughter got A LOT out of it.
Nash - I do want to hear about dd's appt. I really wonder if there's something else going on there..
.It's always interesting (read: Baffling) to me when people can't put on weight. Metabolism is such a mystery to me because I have to W-O-R-K at every pound I want to lose.. I start thinking... tape worm. Where can I get a tape worm? ( I know each extreme is a serious problem, and I don't mean to offend when I joke about it.) It does make you wonder though why some people just naturally metabolize things faster than others. And why some people from the moment they open their mouths just want to eat (that would be "me"), and some have to make themselves eat. Very interesting. DeAnn, that's interesting about the Ensure, and it makes perfect sense.
Well, keep us posted, Nash...Have you had the lab panel done for her?
hugs,
k
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Kaye, yes, dr pulled labs--I'll get a copy tomorrow. Wish my metobolism was faster, too!
DeAnn--interesting about the Ensure. Thank you--I had no idea. Smoothies are a good idea, and any and all recipes are welcome.
Hugs all around.
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OK, back from the dietician. Labs were fine. The dietician didn't really have any new info for me, but did confirm the calorie intake that I'd estimated DD needs was correct. And actually DD was taking that amount in during the spring, but obviously we need to continue it every day. I guess her metabolism has really kicked in due to pending puberty. Anyhow, we'll see the pediatrician again in a few weeks, then go back to the dietician in August and see how things are going.
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Hey all!
wow, tomorrow it is my 3 years mark cancer-free...
June, at DX time the nurses gave me some leaflets for a program offering a similar support. I looked it up and reviewed the people doing it... and decided against. I was 44 at DX time, single divorced mom with a child, a full time job and a career, and all of the well-meaning, wise, kind mentors were retired, kind 65 yrs old ladies. I met with one... and couldn't find anything to talk about but cancer - and that was not only depressing, but also not what I needed at all.
There is more to a patient that his/her illness, there is also the person. Certainly, a mentor to go through med research is great, but if she has no clue of my actual challenges, it doesn't help.
Nash, I am glad there is no medical challenge with your DD, "only" a problem in calories intake. gosh I wish my metabolism would speed up a bit... but I understand it is difficult for you and her anyway.
a round of hugs...
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Happy Cancerversary, lilith! It's hard to believe we're all at or coming up on the three year mark.
Yes, I'd like my metabolism to speed up, too. DD's was always on the slow side, so it's a surpise that she can't keep weight on now. But she is really active. Last week, between bball and karate, she was working out for almost 6 hours a day. Guess that'll do it!
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Thanks to all of you for your responses.
lilith...congrats girl on that 3 year mark...fabulous!
best to all...
June
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I wrote a long post and POOF it is now gone...
Anyway, June, I am a volunteer for Reach to Recovery and I like it. I did meet for lunch with one of my referrals, my very 1st one. We have kept in touch. I find it very rewarding.
Although I can't imagine why anyone would volunteer if they can't remember anything about their treatment??
Nash, I'm keeping your dd in my prayers. Ensure is good, I guess, but I can't drink it cause it has SOYBEAN OIL in it...
Lilith, happy cancerversary!! THREE YEARS! WHOHOO!! Wishing you MANY MANY MORE!!
hi to Kaye, and hope everyone has a great weekend... I'm working tomorrow!
My fundraiser event is going well, but there is STILL a lot to do...
Harley
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hi all,
My fundraiser was a HUGE success!! I made about $900, after I paid for my expenses. I still have orders for the t shirts. Now I need to take a break and just relax for awhile....
Hope everyone is doing well. Summer's over, and that makes me sad!
Happy Labor Day weekend, everybody!!
Harley
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...hmm...
I have another update for all y''all....
I have contacted the Wilmington, NC American Cancer Society, for Reach to Recovery. I met with them last week, and I may become the co-ordinator for Brunswick County! I'm so excited!
Take care, everyone!!
Harley
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Harley, that's great!!! You'd be a great motivation and example...
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Thanks, Lilith!
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Hi Everybody! Haven't been on here in a million years, but wanted to wish you all a Happy Thanksgiving!
Kaye, I just bought a Vitamix today! I'm so excited about it.
Lilith - I might be traveling to Italy next summer! I'm excited about that too! I'll have to message you via Facebook to get your ideas on what we should
Hope you all have a wonderful Thanksgiving holiday!
Love to all!
DeAnn
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Happy Thanksgiving to you (ALL), too!
Have fun with the Vitamix - It was one of the better investments I"ve ever made. What's bringing you to Italy?
Hope everyone's Thanksgiving was good...full of good food and friendly people.
love,
k
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Hi, girls. I haven't logged onto the site in a long time--glad I did, as we have some new activity on our happy little thread.
Thanksgiving was great--it's one of my favorite holidays. All one has to do is eat. Love that. Hope everyone had a good one.
Ooo, ooo, ooo, I want to go to Italy!!!!
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