March 2011 chemo-lounge
Comments
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Hi everyone, just thought I post a short note to let everyone know I am doing fine. I have been keeping up with all of you, but haven't posted because I have been very frustrated lately, trying to get started on rads. The whole process has been very slow for me, and I finally started last Thurs., 6 weeks post surgery. And to top it off, on the day I was to start, the computers at my facility wern't functioning properly and I had to go to the home facility 35 miles away to get treatment. ( my facility is a satellite office). It was either that of delay another week, because my doctor won't start a patient on Friday.
I could write a novel about the misadventures of the whole process, but I won't bore you. Today will be my 4th treatment of 33. I like my doctor, and the treatment center is only 4 miles from my home, so I'm trying to stay positive.
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Here's what I mean. I have the Anti Cancer book, it was one of the first I read after my dx. The author has a list of anticancer foods listed which should be in your diet. Example: oranges.
Yet if I were to go with Mark Norman who Stilts posted about, he recommends no oranges.
The anti-cancer book also recoments almonds, where a book I read, I believe it was about the Block Cancer Center Diet, it said no to the almonds.
While the AntiCancer book recommends multigrain bread, it doesn't necessarily rule out wheat bread, but says to avoid white bleached flours and bread.
I'm with mdg, it's hard, it leaves little to eat. I'm a little sick of feeling scared or guilty because I'm eating certain foods. Plus I still have to feed my DH who likes a variety of food. bc sucks.
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Jules-Hang in there! I hear ya. Yesterday I was sent home again after waiting an hour because the machine was broke down. I already went at 630 this morning and I am going again at 1 pm so I can finish on Friday. That was the second time I was sent home, plus they were closed a day because they were installing a new computer system. It IS frustrating. I was not going to let them drag this into another week. Much more difficult and time consuming than I ever thought rads would be. My skin hurts even having my shirt on. I have a really bad burn on my neck from the rads and I'm sure it's going to look so interesting today at Meet the Teacher at my kids' school. Sorta looks like a big hickey. Yuck.
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Sorry to hear about your frustrations Jules. Do not hesitate to vent here. We all get it and some times it is good to get out what's bothering you. Glad things are back on track. Hope they stay there. Colodisneylover, you are almost there! Good for you! Sorry about the burns. I don't think I'm starting rads for 5 weeks yet, but my RO did tell me that he wants to see you get red or pink or something. If you didn't then he would think the radiation wasn't doing what it's supposed to. That was when I asked him if he thought I'd burn badly since I have such fair skin. So you can at least know the rads are doing what they're supposed to be. It's a shame it's summer or you could cover it with clothes. Reminds me of the visiting nurse that came to my house yesterday. She came to check on my drains. (They are so gross, I can't wait to get them out.) She said I could get a hoodie with inside pockets and put the drains in those. Good idea, but when it's hot and humid, wear a hoodie? Not such a good idea for the summer.
Hang in there girls! We're all moving along in this journey. Please don't stop with the updates. I really love hearing how everyone is doing. Anxious to hear how you're doing Silia and what your next step will be.
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I go to the cancer dr today and I am gonna ask her if there are foods I should avoid? So far no dr has mentioned to me to change my diet. I just eat what I want and I feel like it is all left up to God. Im not gonna let Cancer control my life!
Also I have always heard if you get a burn from rads then it is not working properly? Funny how there are so many different stories. I see the Rad dr next week so I am gonna ask about this too.
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kay1963-yes drains are gross but I am so regretting getting mine out early. I am headed to BS this morning to get my chest drained again. She said it happens-not out of the ordinary-and of course I didn't tell her maybe I exaggerated a litlle to get them out. It is an hour drive to her office and she was running an hour behind so it ate up half a day. She also said it could take 3-4 times before it stops. I look as "full" today as I did Friday and it is uncomfortable-and getting stuck with a needle 4 times isn't that comfy either. First there is the little tiny numbing needle that burns. Then she came at me with a needle that looked as big as a McDonalds drinking straw!! Course I didn;t feel that one but it left a big hole when she was done.
ksmatthews-I am with you. I have cut out most sugar and my beloved Pepsi-a HUGE sacrifice. I also am way better about fruits and veggies and I do take something more than my multi-vitamin in the morning--but I am over trying to figure out what works. Like everyone else who has done reading the conflicting ideas and advice makes me nuts. They all have great credentials and their thoughts seem valid...Way I figure it I didn't eat any more Little Debbies than the next gal so I try to be thoughtful in my choices but I am having a meatball hoagie for my dinner tonight with a chocolate brownie sundae for a chaser. (Having a little back to school party). LIFE IS TOO SHORT!!
I have shed 15lbs and have 15 more to go. I have always exercised daily and will continue that. And cancer sucks and I don't think oranges or no oranges will be the reason I go. This is said in response to me eating 3 oranges yesterday-Kroges got some fancy ones in and they were so good I couldn't help myself. Then I read Stilta post and thought SHIT!!! I knew something that tasted that good had to be bad for you.
Well, off to get a quart drained off my chest. Hope everyone has a great day.
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Believe me, I'm with you all about the diet/supplement info being overwhelming/confusing...just posted what he told me as a FYI...would be impossible for me to live with that strict of a diet...all I can do is read all the information he provides and at least make a few positive changes...#1 on the list right now is more exercise so I'm off to the gym !!!! Hope you all have a good day !
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Thank you lilylady for the info on drains. My ps is very liberal on taking the drains out compared to some. Has to be less than 30 cc in 24 hours. I hear some docs want it to be less than 10. I will not fudge my numbers. I think only one of the four is absolutely ready, two are just about and the other one is still draining over 40. But I am sure they are better than what you are going through.
The differences on the foods is so confusing. I cut out coffee because thought it was bad. But there seems to be some studies that show coffee actually helps prevent recurrences. But when I read more on it, that was only in Er negative cancers. Mine is only
moderately Er positive. I am drinking coffee again. I think the problem is doctors aren't looking into diet and cancer enough. They have with heart disease and cholesterol and such. I think they need to with cancer too. Everyone seems to agree that sugar and alcohol are problems, beyond that seems to be a lot of contradictory info out there. So confusing and frustrating.0 -
HI everyone - haven't posted for a while as I we went bush with a couple of quad bikes - lots of mud and rain but such fun.
Sorry about the delay with Rads Jules - at least you have got going now. My neck burn started to get better about 1 week after rads finished, its was very ugly and quite sore till then. It is now down to only about 2ins square and healing well.
Kay - I hated the drains but I guess from what Lilylady is going through we are better with them in.
Diet is difficult - I have modified but not to extremes. Lots of berries/veggies particularly bright coloured ones like beetroot and beans. I do still have coffee in the morning, I have beef occasionally - we need iron, pretty much no wheat, no sugar, no carbs after breakfast (I need to lose alot of weight - 14lb gone and alot more to go). My onc said 2-3 standard drinks a week are ok so I have the odd glass of wine. I take Vit D, fish oil, and half an aspirin daily, and do lots of exercise. I don't think we should worry too much about this or it becomes obsessive - just eat healty food. There is so much conflicting evidence as Divine says.
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Stilts - Thanks for the nutrition info. it is a little much and i am sooo confused. I'm gonna try to incorporate some of the suggestions into my diet. I've been eating peanuts, cashews and whole wheat bread thinking they are good for me, now I"m not so sure. I am so pissed at breast cancer right now...how it has changed my life.
Mdg & TheDevineMrsM - I am confused too..WHAT CAN WE EAT?!?! It seems if we follow all of the studies that will leave little to nothing for us to eat.
Ksmatthews & Lilylady - I like your way of thinking about the diet issues. Lilylady you crack me up about how you feel about changing your eating habits...LMAO...enjoy your meatball hoagie & choclate brownie. Also, i hope you feel better since you've gotten your chest drained today.
Since i'm so bad about eating my veggies I've been taking a supplement called DIM-Plus studies show it is supposed to help fight cancer. For anyone interested in reading about it there's a lot of information on the internet.
Jules - Glad you are doing well and you have finally started your rads. I hope you continue to do well while getting your rads.
Colodisneylover, Jules and all of you ladies having issues with your rads, hang in there it will be over soon.
Kay - I had my drains removed last Thursday. My PS required my output to be less than 20ml for two days. I know you are ready to get them out, but don't rush it let the drains do their THING. I too cut out coffee but I am still drinking tea so i may be defeating the purpose.
Stilts - I am glad you shared your information with us, but I am so done with all of this conflicting and confusing information. I'll probably eat what i want but in moderation :-)
Hugs
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Pennycookson - I'm just seeing your post, I am so glad you had a chance to get away for awhile and have a good time.
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Asked my Dr today about the diet thing. Her advice was to eat healthy and exersize. She also said eat what you want, because no one certain food has been proved to cause reoccurances. So I am eating what I want and exersizing. Good luck to all!
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The diet thing freaks me out because I was already exercising and eating healthy and I still got BC so I feel like what I was doing before obviously was not good enough. Before I ate low fat, lean, no fast food, wine (I loved my wine), no real junk food unless we were at a party. Back then I did drink Diet Coke..but no more. I read two books - The Anti Cancer and Foods that Fight Cancer. I have cut out all refined foods - no white flour, sugar, white rice, white pasta. I have also cut out anything that contains soy and soybean oil. I try to avoid safflower, sunflower and corn oil - usually only have foods with canola or EVOO. I only eat hormone free chicken/turkey and occasional grass fed/hormone free ground beef. I don't eat pork anymore. All my cheeses are hormone free (Trader Joe's has a great selection). I now eat cage free/organic eggs. As far as nuts - organic almonds (raw is better). For snacks - whole wheat pretzels, multigrain crackers (with no soybean oil), carrots, hummus, apples, 70% or higher chocolate and sometimes organic popcorn popped in organic EVOO. I feel like there is hardly anything I can eat....I also cut out all lunch meats. I do eat a lot of beans but it's hard to find canned organic beans that don't have BPA. I did cut out BPA too - no plastic containers if possible. Cans contain BPA too so I only buy Eden Organics because they have BPA free cans. I finally found tomatoes NOT in a can. They are not organic, but imported from Italy and come in a BPA free carton (I am Italian...I can't skip tomatoes!!!). I cook a lot from scratch. I make banana muffins with honey and whole grains all the time. I also make black bean brownies with whole wheat flower and honey - no sugar. I got a bread maker and started dabbling with that...making bagels, breads. I do also make a lot of different bruschettas with tomatoes, mushrooms, veggies....I was using multigrain bread for that but if wheat is bad..maybe that is not a great idea either now. I guess for me I feel like I have to eat this strict because being healthy before obviously didn't matter - I still got BC. I guess my body is sensitive....it could have been the wine, diet coke, birth control pills, or something else. I will never know.....I just can't try to do everything possible. I think about my 5 year old son and I just try harder. I exercise 5 days a week too.....I have lost 18 lbs since my diagnosis and am back down to a size 4. I am going to continue to do everything else I can do.
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33 of 33 rads done today. Whoo hoo! My mom surprised me by showing up for my last appt (she lives in Lincoln-the town I travel to every day) which was so sweet. The rad techs had a balloon for me and then I went and had an hour long massage- heavenly. It's a wonder I made it home without falling asleep. I had brunch with my parents and DD2 before deciding I better show up at school.
I went "topless" to rads yesterday and today although still wearing the wig to school. Contemplating going without after Labor Day-maybe. It's growing but not quite even pixie-length yet. Maybe with a little highlight and lots of gel!!
Kristy aka huskerkkc0 -
Got a HUGE packet of information/studies from Mark Norman (the nutritionist) today in the mail as he promised after my appointment with him....got so stressed out looking at all the info, I had a bowl of delicious fresh peaches with vanilla ice cream for dinner !!!
I guess having chemo has given me one health benefit...Diet Coke now tastes awful for some reason. According to the info on maintaining an alkaline ph in your body, it takes a staggering 32 glasses of neutral (ph7) water to counteract the acidity of one glass of cola !!! 0 -
Huskerkkc: congrats on the milestone...done with rads...WOW !!!
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Huskerkkc: congrats on finishing rads. You must be relieved not to have to do all of that driving every day.
Reguarding diet, I read the anti-cancer book and have been eating that way for years. Some of the things that I have changed since dx is I have cut out all meats with nitrates such as bacon, hot dogs, lunch meat etc., but I really only ate them on occasion anyway. We eat a lot of fish, and our red meat of choice for years has been Bison (it's grass fed, no hormones). I have also cut out sugar, which has been strangely easy because toward the end of chemo, I totally lost my taste for it. Anything with sugar in it was sinkeningly sweet. My one exception has been very small amounts of dark chocolate. I have lost 15 lbs without trying. Soft drinks have been out of my diet for years.
I am also trying to avoid BHA in canned foods, so I cook my beans and such from scratch. I have also home canned loads of tomatoes from our garden using BPA free lids. Unfortuately there isn't a Whole Foods or other such store for miles from my home, so I'll have to muddle through on my own.
I figure if I include all of the healthy foods in my diet, there won't be much room for the really bad ones. My one weakness is pizza. I'm not giving that up. My brother has a 30 year old friend that has stave IV colon cancer. She and her entire family, including her parents, have gone entirely vegan after reading a book called the "China Study". I just don't think I could ever take it that far.
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HI girls checking in to see how you are all doing. I am on 14 of 33 rads today.So far just a bit of pink under the boobie no itching yet. I cant wait for this all to be done I am soooo tired of my life revolving around treatments. I am joining a support group here in town it starts tonight. I am a bit nervous about it hopeing its going to be uplifting like all of you wonderful women here I will let you know how it goes. As for hair I think I am getting close to shedding the scarves. I have full coverage just a bit short still so you can still see a bit of my scalp. As soon as you cant I am loosing the lids lol. I cant wait it wll feel so darn good.
Hope your all having a great day
Hugs Kymn
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Today I begin the first of 33 rad treatments. I only travel 15 minutes to get there but it seems like, sheesh! Six weeks of this is a looooooong time!
I hear ya, Kym, about being fed up with life revolving around the tx!
I went to a local support group several weeks ago. There were at least 15 women of all different ages there, it surprised me there were so many! It really, really helped me. And I was emotionally in the pits at the time. They meet once a month, I will definitely go back.
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Kristy, congrats on finishing rads! Are you all done all tx now? What a milestone! Hope you can celebrate.
Mrs. M, Good luck on the start of rads! Glad you liked the support group. I think there are a few others here in one as well? I had a call this morning from the American Cancer Society. I thought they were going to ask me for a contribution, but no, they asked me if there is anything they can do for me! They got my name from the Look Good/Feel Better work shop I went to a while ago. I asked about a support group and she gave me the phone number for one that meets the first Thursday of every month about 10 minutes from my house. I am going to check it out. I think it will be good for me too. Kymn, anxious to hear what you think of the one you are going to.
Penny, you really have some adventures! That trip sounds like a lot of fun. Glad you enjoyed it. I have a new appreciation for the drains thanks to Lilylady. Will make sure I follow the ps instructions on it. I could get one more of the three left out now, but will wait until next week. Have an appointment on Tuesday with RO two floors above PS so am hoping to be able to pop in to the see the PS nurse before or after and hoping I'll be able to get the rest of the drains out legitimately. Completely agree a few more days with drains is much better than what Lilylady is having to go thru. Sorry you're going through that Lilylady, but thanks a lot for sharing the info to keep me honest. Otherwise I too would have been tempted to fudge the numbers.
Stilts, thanks very much for the nutrition info. I really appreciate it. I am sorry if I sounded ungrateful. I am just frustrated with the conflicting info and the ever increasing list of foods considered "bad" for recurrence. From what I've read, it does seem there are some particular recommendations depending on what your diagnosis was. For instance, I read coffee and caffeine is good for triple negative cancer. And the soy I believe is only a problem if you have ER+ cancer. And there is disagreement about that. I would like to hear more info if/when you get it even if it does frustrate me. Thanks a lot!
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Huskerkkc - glad the rads are done - keep looking after your skin, mine still got worse for around a week then got better. The neck burn is almost gone now.
Kymn and Divine - it does seem like a long time, but the good thing is you seem to get a good way through before getting any side effects, so by the time you do you can see the end of it.
Still only about 3mm of hair, but eyebrows and eyelashes have started to grow back. Interesting to hear about the support groups. I guess I am trying to pretend that everything is normal now and don't really want to sit around talking about it. Still trying yoga - but god I am useless! they did the balance on your hands thing yesterday "Just lean forward on your hands and lift your feet of the floor" -Oh really - no chance.
Great news , although early days yet - my daughter is expecting her second child - a new grandchild for me to play with next March!
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You all are making me feel guilty about what I am eating! I have tried to make small changes and keep telling myself I will go all the way when all treatments are done...that's less than a week away! I will definitely do my best, but I sure wish some of you could come cook for me!
I have only 4 rads treatments left. My skin has held up remarkably well (knock on wood), and the fatigue has only just kicked in the past few days. I have a hard time staying awake until 10:00. I am really looking forward to being done...it feels like I am just pushing through these last days to get there.
Penny: congratulations on expecting a new grandchild! Now that's something to look forward to...
DivineMrsM: Starting and ending rads was the hardest for me in terms of facing six long weeks. In the middle, you just accept the inconvenience and monotony.
Kymn: I am getting close to shedding the scarves. I keep putting it off, but I think I will try it when rads is done, after they remove all the tape and marker all over my chest. Then I can at least wear a shirt other than a t-shirt and look more feminine.
Husker: Glad you are done, and I bet your car is too! That was a lot of driving. What a relief.
Colodisneylover: I get to meet the teachers tonight. It would be nice to not look like 'the cancer patient,' but I guess that's not in the cards.
ksmatthews and deedee: no doctor of mine has been willing to commit to the idea that diet could play a part in cancer recurrence, etc. What is frustrating is that if they say 'eat a healthy diet' what does that mean, since certain foods are encouraged and then discouraged with each study? Very frustrating
lilylady: I hope you get those fluids under control. What a pain for you!
And to all I haven't mentioned: it's great to see we are nearing the end of these treatments!
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Good morning
Well went to the support group last night.It was alright, not really sure what I expected but it was nice. I think it is geared more towards women at the begginning of treatment but still its nice to talk with some ladies going through similiar emotions as me. I will go back next week and then make a decision about it. I felt a bit frustrated because I asked about a support group back in January when I was diagnosed and kept asking and nothing and now that I am almost done they set me up in one. Oh well maybe it is happening for a reason and there is something there I am supposed to learn or help someone else.
As for diet I dont really cut out anything. I try to eat a balanced diet stay away from preservatives as much as possible but hey if I am camping and we hare having hot dogs then hot dogs it is. I really dont think a couple of hot dogs or whatever the food choice is is going to bring back the cancer. Overall just eat healthy its all we can really do I think. If it was a certain food or food group that caused cancer I think there would be alot more of it not that there isnt enough but you think of all the obesity and it just doesnt match up to the cancer numbers . Anyhow just my opinion
Have a great day girls
Hugs Kymn
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I have had the biggest meltdown since my initial DX today. You are the people I want to share it with since you have seen me thru this so far. My cancer road has for the most part been upbeat and easy. I am also pretty hard to rattle emottionally or physically.
Chemo was a breeze til the last one. BMX-1 night hospital stay and stopped on the ay home to eat Chinese, go to Lowes and stop by Walmart. Never needed a pain pill and the whole fluid thing I basically did to myself. Every part of this has been pretty simple and has barely disrupted my normal routine.
I know you guys know I am Stage IV. Divine and I are, I think the only 2. I had very large mets to the liver and lung and was given less than a year to live. Well chemo kicked some serious cancer butt and by my midterm scan I was termed Oligometastatic-"potentially curable" Stage IV. Happens in less than 2% of cases. Curable meaning my chances for long term surviival and reocccurence were the same as someone who only had cancer in their breast. We all know "curable" is still out there waiting to be discovered.
Well all that crap came crashing down today. I saw the liver guy Mon and he was very upbeat and positive. Tumor is almost to tiny to be detected-he had ordered a 3-D reconstruction made and when I go for my Onc visit on Fri I would know what the rest of my game plan was going .to be. Today i saw the lung surgeon and she just said straight out "There will be no surgery. All your cancer is too small to be felt therefore we can't do surgery." When I asked why they can't remove the part of the lung where the cancer was she just said it isn't done. She has never once in her 16yrs even considered removing metastatic breast cancer. She said the 3 tiny dots that are now my lung mets are just dots on a 1 dimensional thing like the scan but the lung is a big thick tough organ so while she might be able to locate lengthwise where they are but depthwise she would have no way to find it. She said trying something like this now would cause scarring and maybe preclude doing something later. She said my onc and the liver guy are also in agreement.
While you guys might not be up on Stage IV I know you know that a tiny dot of cancer can quickly become bigger and the absolute worst part is that it can send it's little friends to my bones or brain or even other parts of the liver and lung. I had been pinning all my hopes on them wiping out all of my cancer-that's all the onc has talked about and now they have slammed the door shut. I am sure there are plenty of girls on the Stage IV threads that would be over the moon with this but I feel betrayed. I was sobbing so hard I was hiccuping-and I can't seem to stop. I am 4 pindots away from being cancer free...and now my life will be waiting for the next scan to see if it is growing and spreading. Or even more fun starting on more drugs specific for lungs and liver. I will be getting scans every 3 months for 2 years.they will also now add the brain scan as part of it. No peace ever from cancer. I wish he had never even brought any of this up.
I agreed to Rads in order not to have any nodes taken but I am so negative right now he can take his rads and shove them. Rads in Stage IV are not always a given. I had a BMX when I could have done a lumpectomy. Path report shows no remaining cancer in the breast. Nodes have never lit up in either 2 Pet scans or 4 CTs.
I am not and never have been a cryer. It DOES NOT make me feel better but I can't quit this morning. I know I will not be able to hold it together tomorrow for my Onc visit. I want to cancel but it is my Herceptin day also. My chest is also still picking up fluid so I go back to her hellhole office tomorrow. if I have to wait longer than a half hour this time I will go home and do it myself.
I will be back later to read what has been going on with everyone else. This has been such a long post and I just can't get it together right now
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Well, shit, lilylady. I am so sorry to hear about this. I won't even attempt to lessen the blow. It's just too much. We are here for you, and I will say extra prayers for you today.
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Oh, Lildylady, I am so sorry. Don't know what to say. If there is anything we can do besides listen, please let us know. We are always here for you.
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Wow, Lilylady, I am speechless...we are here for you.
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That just down right sucks Lily lady repeat after me.... YGDMFAHSOBB.......oh yeah that feels good to say
for all you who understood my acrynon shame on you lol.0 -
So sorry LilyLady - this business is one damn blow after another. Please carry on with treatment though, we want to still be chatting to you in 10 years time.
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Kymm, that is the first time I have laughed all day. My factory girl background decoded that right away. Thanks.
I thought I had reached the peak of freakdom but I just looked in the mirror. Bald head, no eyebrows and eyes almost totally swollen shut from crying and that is before you get to my little old man shrunken chest.
My parents and frineds have filled up my answering machine so I am going to call them to say what?? I am not having major surgery on 2 organs?? Who wouldn;t be happy about that? They will not understand the implications and I am so not ready to start that discussion.
Thanks for the thoughts guys. I think it's time I sign up for some sort of happy meds. I never realized how wrenching the ending to this would be.
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