March 2011 chemo-lounge
Comments
-
Kay - my LE started abour 3 weeks after rads, probably bought on by them as I had 23 nodes out and the rads would have fried what was left. I only had quite mild swelling around the elbow area and hand a bit puffy, but they say catch it early. Most of mine has gone down - I do alot of stretches, raise my arm in the air etc. I am just going to wear the sleeve when I am sitting at the computer for hours and when doing weight training and boxing.
0 -
lilylady, fluffqueen we don't have to suddenly be BC activists because we were unlucky enough to end up with this damn disease. I focus on trying to make people round me happier - because this disease teaches you how important people are. We can just try to be better people, we don't need to be better BC people. I also don't want to be involved in things that are a constant reminder.
Its hard to get through to people close to you that they should change a few habits - my family have all started being healthier, but friends haven't - but then after all I did not give them up till I got this - hindsight is a big eye opener.
I also get the frights sometimes - mostly in the middle of the night. Pick on one lovely thing to think of at these times, almost like a totem, I think of particular memories with my 2 year old grandson. Make yourself think of them and not other stuff.
0 -
Just received an email back from Mayo with a LOT of information...the vaccine trial is starting late this year or early 2012...there is a number you can call to set up an evaluation (which I plan to do)...if any of you would like me to forward the email with all the information, I would be happy to do that...just send me a message with your email address.
15 more rads to go !!!!...over half way..I get slightly pink by Friday but usually subsides over the weekend...I am using a clear Aloe Vera Gel and Aquaphor...really tired of going there every day but I shouldn't complain...this is nothing compared to chemo
Hope you're all having a good week so far...
0 -
Stilts-the email I received said the evaluation was for other treatment options and clinical trials. It says they will contact me as it gets closer to the participation date. Is that what yours says?
Penny-you always lift my day and you are right on trying to make people around us happy. That is what I am really focusing on. My niece is getting married and her mom died a couple of years ago from brain cancer, so I am trying to fill that void for her somewhat and make sure she has a wonderful wedding experience. So far, it has been great.
0 -
Lilylady-Thanks for putting that out there. I am right there with you. The walk is here this weekend and several people have asked if I'd like to be on their team. I just can't do it. I just am not there yet. Not sure I ever will be. I haven't cried for a while and I'm sure I would there so I'm not going to do that to myself. I'm proud that I said no because I used to be a "yes" girl and never told anyone no. Not anymore!
I just turned 36 when I was diagnosed in January, so I always think of myself as 35 when I got the news. I'm not sure why I do that. The Scar Project is something I am going to share with my friends. I think it makes it very real. I looked at their website and it was good.
0 -
Having moments of weepiness the last couple days. After taking off 5 weeks to do my radiation/get my thyroid removed and basically just rest up a bit, I've been back to work for 3 weeks. I was a bit worried I'd be super tired (my job is somewhat stressful) but I've been pleasantly surprised to be feeling really good. Almost good as new. My hair is finally filled in and everyone just thinks I made a bold hairstyle choice. It's like I almost was able to forget about it all for a few weeks.
But yesterday found out that a friend of a friend who was diagnosed with breast cancer around the same time as myself, died last weekend at 31. She was this really gorgeous girl who was insanely accomplished for her age. Of course it fills me with terror and sadness. Don't know wether to be freaked out (not that that helps) or just focus on the notion that I've been incredibly lucky to get to this point in my treatments and appreciate the fact that I'm alive.
Sorry to bring that to the thread. It's just been on my mind all day.
But on a rebuilding note: I'm meeting with my PS in 2 weeks, but was wondering if any of you are having DIEP reconstruction after radiation and if so, how long is your doctor making you wait first? I really just kinda want to get on with it, but she had mentioned that I might have to wait 6 months depending how well I reacted to the radiation. I had 25 sessions in all, and was pretty much fine untill the last couple, which made me peel (and be pretty sore) for the week after my last rads. But now it looks totally healed.
Sounds like everyone is doing wonderfully. So nice to real about us all getting back to feeling good.
0 -
Bikenyc: I am so sorry for the loss of your dear friend. It saddens me too. BC is so wicked and sneaky. I hate it. It seems like women younger and younger are being affected by it too. It really makes you wonder what is causing it in so many of us. Prayers to you and your friend's family. I am glad to see you back on here. Love the photo with you and your bold hair choice. You wear it well!
Husker: Happy belated birthday! I hope you had a fab day and did something fun!
Lily and Colodisney: I too cannot muster up being in a race and proudly wearing the survivor shirt or something. I hope by next summer to be more ready to participate and raise some money for research. It is super emotional for us...most people don't get it. Maybe in time we will feel differently.
Stilts: Thanks for the clinical trial info. I will check it out.
Penny: I agree that most people don't take our situation as warning enough to change their lifestyle. Come on - if I can get BC, it can happen to others. I was in shape, taught aerobics and ate healthy and it still happened to me. I wish more people I love would change their lifestyle now to prevent illness in the future.....it's frustrating like they are "invincible" and it won't happen to them. It can happen to them...I am living proof. So frustrating.
0 -
So sorry for your loss, BikeNYC. It is really hard when it hits so close to home that this is such a terrible disease.
I'm not ready to do the walk yet either. My BS has a big group that designs t-shirts and walks together, they do a fund raiser before hand, it's called "Laidley's Ladies and Gentleman". Maybe next year, it's just a little too fresh.
Lily - your walk is over, how did it go? I know you didn't do it, but many did in your honor. I saw something about that art exhibit. Is it part of a book? Or maybe I just saw something similar. The pics were shocking and beautiful, at the same time. It was very moving.
Stilts - thanks for the info on the trial, I'm going to check it out.
Colodis - Glad you are doing well and saying no!
Penny - I love that idea of picking one thing that makes you feel good to help you get in the "happy place". Fortunately I have meds to help me get through those little brain games in the middle of the night
Hope all are doing well. Happy birthday to our September girls!
0 -
BikeNYC- so sorry to hear about your friend. It is the young ones that break my heart.
Colodisney-you are young!
I just wondered how many of the ladies in our lounge were that young. The Scar Project is both a fundraiser and to raise awareness of the 10,000 women every year under the age of 35 who get BC. I did win 2 free tickets for writing why I wanted to attend.The pictures are of 3 young women and were taken by a big name fashion photographer. I don't think he tried to pretty it up-they are stark images done in an artful way-but they are in now way easier to look at. Since I am still horrified every time I really look at my scars in the mirror I wonder what people who have had no contact with this disease will make of it. I wish my tickets were to the opening Gala with all the good food and wine...
The other question I had is when do you become a survivor? We all will probably never forget the day we were told we had cancer-that would be our cancerversary-but when do I change to survivor status?
0 -
I said from day of my diagnosis I am a survivor!
0 -
Penny, Colo, Lily and others-I started a discussion thread called Living in the Moment-mental health therapy 101 for survivors. I am going to try to put one positive thing on there every day that might help us face the future a little more confidently. Hopefully, others will contribute. Penny-your comments on here are so good! And all the great quotes in the signatures, etc. I thought it would be nice to have a thread we can go to that can provide a little positive mental health.
Lily-I have never been able to use the word survivor. First, I am afraid I will jinx myself. Second, I feel that survivors have survived something and it has ended. Since I am looking at years, hopefully decades, of a potential return, I just don't feel it. I am using no evidence of disease, or NED. I'm just more comfortable with it.
bikenyc-there is a video on youtube I think done by Beth Israel, of an actual Diep surgery from start to finish....literally. I watched the whole thing. I think if you search Beth Israel and Diep video you will probably find it.
0 -
Thanks Fluffqueen!
BikeNYC-I am sorry about your friend. It's hard to hear about others. I have a friend my age who has a husband in hospice. I don't want to seem like a bad friend and not listen to what is going on, but it's really hard to listen to. Does that even make sense?
Yesterday was my 10 year wedding anniversary. No celebration but maybe something later after all of this is done. Getting my final drain out today and excited about that. TE is doing really well and I really like my new PS so much better than the first one I had.
Looking forward to a nice fall weekend!
0 -
Colodisneylover, I understand about the not wanting to listen. My identical twin sister's DH had stage 4 melanoma. He went into hospice in March. He died in July. I found myself thinking of myself in the same situation. It was a much different perspective than before I had BC. I also felt bad for not only thinking of them, but making it about me.
0 -
Happy anniversary colodisneylover - 10 years is great, glad everything is going well.
fluffqueen - love the new thread
bikenyc - so sorry about your friend. really hits home when you hear about young women like that.
Went to work without the headscarf today - still very thin on top and only about 1/2cm long but I have had enough of the headscarves. Strangely I felt much stronger with the half bald head than the scarves. The client complemented me on 'My new aerodynamic look"
0 -
MDG-if you are out there... I have started at a gym... and was truly pathetic. I used to be really stong-needed to be for my job. Without going into all the excrutiating detail it was a huge eye opener.
I have been able to do pretty much anything I needed to do all thru treatment and I feel really good so I figured I was pretty much back to my old self. Ha Ha. I am using a trainer to get myself started so we did an upper body routine first. She handed me 2 10lb weights to press over my head and I couldn't lift them more than twice. I snickered when she picked them up and thought "she must think I am poor little cancer girl-I can lift Way more than that." Turns out I AM poor little cancer girl. We had to back down to 6lbs before I could get 10 reps. My legs weren't much better. Good thing is when you start out at zero it is easier to track your progress. Sad part is the diet is way more critical than the exercise-I am trying to shed 30lbs. Beans and grains and fruits and veggies-YUK!! I have been embracing way less processed foods but my taste for sweets has come roaring back and I have been indulging big time. I did up my fruit intake last night-I made home made caramel and then slathered it all over a nice freshly picked apple.
I was so completely surprised at how weak I am. I guess I am fit enough to do any work i need to do here at home but I will have to be way stronger to return to work. I have the month of October to get it done-I have told my family it is ME MONTH. I will be glad to help if it doesn't interfere with what I have planned. I am going to work hard and eat right and be better than I was before BC. I have a history of "great starter/poor finisher" but I am not going to get derailed this time.
0 -
LilyLady - I cried when I first went back to my trainer. There was my sister punching and kicking away and I was pitiful. It has come back over the last 12 weeks though - arms are pretty much back to normal, legs still have a way to go strength wise. After even a couple of weeks I was much better.
Onc says I have to lose 40K. 10 down at the moment, also on the Beans and grains and fruits and veggie. I have pretty much no carbs after breakfast which seems to be working. I have ordered natural chocolate with raw cacao and agave instead of sugar from livingearth.com.au and have a couple of squares a day to satisfy the sweet tooth.
You will get back to where you were just hang in there
0 -
Waiting for call back from Mayo to arrange appt. there to see someone in Oncology clinical trials...my RO strongly encouraged it....he's a Mayo grad and said it would be good to have my name and info entered in their database even if the first part of the vaccine trial fills up quickly...so we'll see. Rad #24 of 35 is tomorrow...I am amazed how fast the past few weeks have gone...getting a little red but not too bad. Arimidex is giving me some good hot flashes but nothing like the "real thing" I went through 10 years ago. About all I can handle at the gym for exercise is the exercise bike and a few weights...my heart rate goes up really fast...what a wimp! Had some metabolic testing at the ONC...they say my metabolism is slightly higher than normal so I should be able to lose weight fairly easily if I just watch my calories...which makes me think I must have been eating like a pig all these years ! They also said losing even 10% of your present weight has significant health benefits...I am using that number to motivate me...seems more attainable than the 50 pounds I REALLY need to lose !!
Hope you are all having a good week...
.
0 -
Hey Lily...it takes time. Be kind to yourself. I did workout all through chemo and everything 5 days a week but I started running again a week ago and boy that was a rude awakening! Cramp in the side....felt like torture. Three miles of hell.....blech!!! I tried to do a push up and my implants and chest felt so strange....I am afraid to do them. I only did 5 lbs for my chest presses too...I use to do way more. My shoulders are weaker too....I just started back on weights about a week ago (I waited since I had exchange surgery in late June). I actually taught my first fitness class here (since we moved) yesterday and it was a weight class...OMG! I had to tell them I was recovering from a shoulder injury and that's why I didn't do all of the exercises with them (I had to skip some of shoulders and the push ups for sure!). Yikes! Just think....if we stick with it, we will be doing good in a few months! You can do it!
If you can just continue to boost your activity a little each week and make a few better choices every day you are doing good. It's a process...it's hard. I also have had a hard time finding food that I can eat (I am trying to do the Anti Cancer book diet) which is hard. I started adding Healthy Food Finds to my cooking blog this week....I have found some foods that are better choices in my extensive searching so I thought I would start adding those items on my blog to help others find things to eat too.
0 -
mdg-I had started changing eating habits last December before diagnosis. It is much diferent now. I have pretty much cut out white flour and white sugar. I dropped ten pounds so fast. Now, I eat mostly organic, whole grains, lots of veggies and fruit. My vegetarian daughter has introduced me to some things also. We like quinoa. It is kind of like rice but with a lot of protein in it. Really good for you. I have tried different kinds of pasta, and we have settled in on rice pasta. I like it better than wheat. Even my husband likes some of the changes, but he was never a sweets eater. That is me!
I have been working out at the gym again, and it is tough. I am trying to build back up aerobically, but I HATE it. Hate running, hate the eliptical, hate the treadmill. But...I am doing it like a good girl. It is just so boring. I am just doing light arm weights as I just don't know how paranoid to be about the potential for LE.
My oncologist yoga master makes me do 13 Sun Salutations with him. I am the most fit in the little class. That has push-up type stuff as part of it and I try not to worry.
0 -
Fluffqueen, my cancer center has a physical/occupational therapy center. They have a program with weights to prevent lymphedema. They did a study and it showed that women who participated in the exercising with weights were less likely to develop lymphedema. The NP was going to refer me to the program on Wed. when I saw her, but I already had lymphedema. Ugggg. This really made me down, but at least it is early and that is supposed to make a big difference. Going to a lymphedema therapist next Thursday. Once whatever has to get done with that, I'll start the weight training program. But this is a specific program and supervised. They don't recommend just doing any weight training on your own.
Lily, don't feel bad about losing some of your strength. You will get it back. It would have been much worse (you would have been much weaker), if you weren't so strong before bc. I am sure you will be back to your former strength soon. But do be kind to yourself.
Maria, I am going to check out your cooking blog. Thanks for doing that.
0 -
Fluff: That's great you have changed your eating and are working out. I too have tried to remove refined sugars and white flours. The hard part for me is removing sunflower, safflower and corn oil...come on, a girl needs her tortilla chips now and then! The soybean oil is another tough one as it appears to be in everything including bread. I just bought some spelt pasta to try. I have been eating whole wheat but I am now trying to minimize wheat too. I just found some good Chocolate Fudge bars for a sweet treat that don't contain soy or dairy. They do have a small amount of organic sugar in them and agave. I put them up on my blog. They were very tasty....good for that occasional treat. I have tried quinoa and am trying to use that more. A friend substitutes it in rice dishes....casseroles, stuffed peppers, in soups. I need to try it more as I bought a huge bag of organic quinoa at Costco. Have you seen this website with quinoa recipes? http://www.cookingquinoa.net/category/quinoa-recipes Lots of good ideas.
0 -
I'm glad to hear I am not the only one feeling weak! I have had a hard time recovering my energy; I tried to work out as much as possible during chemo, etc. but I am still not where I was to begin with. I have lost 7 of the 15 pounds I gained since diagnosis, though.
mdg: I am still impressed with your diet commitment. I am trying to make all those changes, but it has been so hard for the family. My kids complain about new things; the thing is, we have always eaten pretty healthy, so it's not that different!
My arm strength is so low that I am afraid of any pushups or related exercises. I am afraid I will really hurt it. So I walk with a 2-pound weight to strengthen my arm. I feel like a wimp!
I went to a conference this week where I saw a lot of colleagues who I haven't seen in a year. A couple of comments that I didn't really know how to respond to: 'You have a new 'do!" "Your hair is so much shorter!" And from someone who knew "I was so surprised and thought to myself 'No! We need your work so much!" (as in, you can't die because we need you to keep working). Always interesting to hear all of the reactions.
0 -
Maxine-the person who knew should be ashamed...that is rude. I have one real hair wig and a couple of synthetic ones. Whenever anyone who doesn't know tell me I have a new do or they like it, I just say thanks, I like it too, and move on.
mdg-I have decided I can only do so much. I did find a new cracker that I LOVE. Nut thins by the Blue Diamond folks. They are delish. No soy and no flour. They do use white rice to make them. Very tasty. I like the pecan and the almond ones. For bread, Ezekial makes one called 7 sprouted grains. It has no soy, and is almost all whole grain. I like it toasted with butter and a little organic honey. My husband tolerates it.
0 -
I saw my grandson (2) yesterday - he has got used to seeing me bald, but was quite taken with the tiny amount of hair. His two comments:-
Its just like grandad's
and
Its all soft like a babiesI think I prefer the second!
0 -
Penny-my husband rubs my head like he's petting a dog. Makes me laugh. Then the other day he told me maybe I should keep it this grayish whitish color. WHAT???? So I can look like his mother? I hardly think so. I just gave him the stink eye. LOL
0 -
Hi girls...
I think the idea of making small changes over time for diet is good. I am in a support group that meets weekly. There are 7 of us that meet with the oncology nurse navigator and the social worker. Both are excellent. We meet for 3 hours a week for 3 weeks. It is part of a study, but it is excellent. The last two weeks have been with a "guest" speaker for the first hour. Last week we had a registered dietician and she was god. I lost 20 pounds during chemo and have been so excited to keep it off, but really need to lose at least 20 more. Right now I am working on just maintaining the 20 pounds, which I have done now for several months. Being back to work helps! I am not eating anything processed (goodbye, dear hot dogs-so quick and easy for lunch) I am eating smaller portions, which started during chemo when nothing tasted good. I am triple negative, so soy is not an issue. It is frustrating how careful one has to be in reading labels. Something sugar-free, doesn't mean it doesn't have sugar and may and often does have more carbs than the regular product! Also sugar-free doesn't mean fat-free. It's all a balancing act. I was never one to exercise but am trying to walk everyday and that helps, especially for fatigue and for leg cramps, since I still have some neuropathy. Plus I have to walk my cute little Gracie! Talk about mood lifter.
My hair is growing quickly and is light and starting to have the chemo curl. Am going to need a stylist soon, as the gel can only do so much. I look kinda punky with my spikey hair, but have gotten lots of nice comments. But I see myself in the mirror and look so old and tired. I don't know what to do about that. I'm sure some is just self-image. Maybe the rest of the world doesn't see that.
My Huskers are getting a whippin' by Wisconsin tonight. There goes are winning streak! Just like my poor son's HS team. They were 4-0 and got beat last night 47-7. Felt so bad for them!
0 -
Kristy, so nice to hear from you! I am glad to hear how well you're doing. Very jealous of the hair. Sorry about the Huskers.
I am on cloud 9 right now since my Phillies won! It is crazy how good that can make me feel. Hope they can keep it up.
Penny, I think your grandson takes after your Mum. LOL
Simulation is on Monday, and rads are supposed to start Tuesday as long as the PS gives me the go ahead on Monday. I think she will. Also, found out I have lymphema
, going to physical therapist on Tuesday. I don't know too much about it yet, but I guess I will find out soon.Silia, I hope you're doing well. Looking forward to hearing from you soon. Hope everyone else is doing well. Have a great rest of the weekend Ladies!
0 -
End of week 1 for my new exercise program and much progress has been made in such a short time. I can now actually lift the carton of milk out of the fridge without crying and I can get down the steps in the middle of the night to go pee-and actually make the bathroom in time.In other words, the soreness is easing and I am already able to increase both the weights and reps.
The food thing wasn;t nearly as successful but baby steps are better than no steps at all.
I have an onc visit/Herceptin on Tuesday. Am hating to tell him but I am having an issue that is scaring the crap out of me. I am having cold flashes. They start out of nowhere and the shivering gets so bad my musles lock up. My teeth chatter so hard I am afarid I will crack one. There aren't enough blankets in the world to warm me up. they just have to run their course. I had this last night and it lasted almost a 1/2 hour. When it stops I am absolutly worn out. They have all been in the evening-not every night either but enough times to make me nervous.
In the last 2 weeks I have had both a pertussis and flu shot. Getting a shingles shot too but not til next week. Wondering if they could have anything to do with it.
I have never gotten the hot flashes-wondering of this is my version of it? Anyone else have this? It almost feels like a seizure.
0 -
Lily: That sounds just like my hot flashes, but cold! I don't shake though.... After they are done, I do get cold though and have to pile on the blankets for a while. Talk to your dr about it....let us know what he says. I am also with you on the sore thing...I started running and doing weights again and I have been sore the past 2 weeks. It is better now...thank goodness! Keep up the exercise....that's great.
Kay: My Tigers won today....they needed to after last nights beating! I have been wearing my Tiger's wear since we moved here......it is definately noticed by the locals. I am sorry about the lymphadema.....that stinks. It is so sad they can't find any cure for this...so many gals get it.
Kristy: Glad you are doing OK and the hair is growing. That's great you are keeping the weight off. I have gained some back....I gotta work on that now! That's so cool you get to meet with the nutritionist and such. I wish they had that here.
It's so good to hear everyone's hair is coming back. By the holidays you ladies will be a few hair cuts in! That's great news!
Fluff: Small changes is the way to do it...if you go cold turkey, it won't work. Just try to make better choices daily. In time you will have made lots of changes that are good for you.
0 -
Kay: will be thinking of you this week as you go to your rad appts...you will be checking them off just like I have been and before we know it...DONE !!!...be sure to use whatever creams etc. they recommend...I have been getting red by Friday but my skin seems to recover over the weekend. ELEVEN more to go for me..last week I felt like I could fall asleep every time I laid out on the table !!!
Beautiful day in Minnesota...almost 80...DH and I took a long drive in the convertible (top down)...had to hang on to the wig !
...we went to a couple apple orchards and had lunch...lots of sunshine and fresh air !!!Lilylady: hope you're feeling better and your MD can figure out what's causing the cold flashes...they sound very uncomfortable.
Hope you all have a great week ...
0
