July 2010 Rads

rocknesmom

Welcome, Colleen!

Sounds like things are moving along for you! Isn't it nice to be "done"? A few of us have commented on the fact that no one seems to understand that you are never really done!  Just the daily grind of radiation is like a job! I know what you mean about wanting your life back. I hate waking every morning with radiation (and my painful chest!) the first things on my mind!

I have 2 daughters getting ready to go to college (one a junior, one a brand new freshman), and I barely have the energy to do all the shopping with them. We still have so much to do, and they leave in 2 weeks! They are great girls, best friends, and they are doing a great job of getting much of it done without me, which I HATE!!!!!

Julie, what a great celebration you have planned! Sounds so wonderful! My parents have a summer home on Lake Michigan, and my celebration will be a couple of weeks ALONE (with my 2 beagles!) on the lake. Can't wait! I finish rads on the 20th, the girls leave that weekend, then I begin my vacation!

Still struggling with the throat swelling. Living on fruit smoothies, Ensure, and scrambled eggs! Can't wait to have a grilled hamburger when this is all done!

Happy Weekend, everyone! Hope we all get some rest, and can take rads off our minds for 2 days! 

Love and hugs to all!

Linda 

Chicago1018

Linda - I feel so bad that you can't eat!  Did they say that it should resolve quickly after you are done?  My throat has been painful swallowing but I am a bit closer to finished that you are. (I start my boosts on Weds.)

Pat - thank you so much for describing the boosts.  I keep hearing people talk about them but had zero idea on what to expect!

Donna - no one has mentioned skin getting worse after treatment is over either.  I'd be interested in anyone else who had heard that.

I saw a couple different posts talking about itching and I can't remember who was asking about what to use. My Dr. gave me an Rx for aristicort which has helped immensely.

Like many of you, my arm/chest feels all stiff and painful like it did right after surgery.  It feels like the skin is smashing my tissue expander into my chest.  The Dr. keeps assuring me that it won't pop like a water balloon. . .but that is what it feels like.  I guess I believe him . . .sorta.  ;-)

I relate so well to what many of you are saying about people downplaying treatment or disappearing at this point in the process.  During chemo I heard from so many people and the same right after surgery.  I don't want to make BC my life or anything, but I still have to finish rads, complete my fills, do my swap and nipple recon surgeries, and take tamoxifin for 5 years...just doesn't feel like I am "done".  I was DX in November of last year and I kind of feel like BC is all I've done this year!  It will be a process to find and settle back into the "new normal". I guess I can't fault anyone for not understanding exactly.

Two day break from rads!  Have a great weekend everyone!

Julie50

Chicago1018 where in Chicago do you live?? I grew up in Oak Lawn and moved up north 10 years ago.  Lake Villa, IL...Miss the city tho.

So today was my 10th day and glad its the weekend.  Getting sick (sinus infection) and a bad tooth all on the same side...:(

So I was wrong my last day of Rad is the 14th of Sept so we had to cancel are trip to the B&B until the end of Sept or beginnging of Oct.  How does one feel once it has stopped???? 

I hope everyone has a wonderful weekend!

Julie

Julie50

Ladies:

 Ok personal questions.  The brown around my nipple is HUGH is that normal...And my boop is turning pink/red.  

Thanks Julie

luckeme

Hi Everyone,

I had my last zap on July 21, my skin was great throughout treatment.  It definitely started looking worse a few days after, but still felt okay.  About a week after, I noticed some spotting on my camisole along the scar line as the peeling began.  It wasn't milky like pus, but it was like a blister had popped.  I had more each day until this past Monday when I went in to have the nurse take a look.  She said it was normal, but I was wearing really lightweight poofy-boobies in my camisole to fill out my shirts, and she said the friction from those was irritating the scar line - my last 5 rads were concentrated on the scar so it got fried a lot more.  She gave me some "bandaids" called Mepilex, they are spongy and stick on your chest but don't irritate.  They have been a nice protective layer for my scar line skin to heal underneath.  I ditched the poofy boobies and have come to work flat chested (rufffly, flowery shirts are great camoflage!).  Every morning in the shower, I let the Mepilex get soaked with water and it comes off gently so it doesn't pull on the peeling skin, then I put a new one on.  My skin is looking better every day, but here I am over 2 weeks past my last rad.  I thought it would look a ton better by now, but the doctor said it is really looking great for having 33 zaps. 

Remember, if you had a mastectomy, your nerves were cut and may not be signalling pain to you so you really have to pay attention to how your skin looks, not just how it feels.  I can't even feel hot and cold there, so I really have to be careful in the shower and remember that this is burned skin that shouldn't have any more heat on it for awhile.

I hope this is helpful, at least maybe you can all be ready for it.  I didn't know it would get worse, and it would have been nice to be prepared for it, but it is all manageable.

Have a great weekend!

Jennifer

hindimetfan

Julie- Hi.  I finished rads about 2 weeks ago and start Tamoxifen some time next week.  We're waiting for my burns to heal.  My breast did turn bright red from about 2" above to 3" below!  So much so, that when the (dead) skin on my  nipple came off, it took me a while to realize that I was not going to spend the rest of my life without a nipple! Because it was essentially the same color as the rest of my breast, which was red, I thought my nipple was a goner!  Then, Good Morning!  I realized that whole side was red and I do still have a nipple, albeit hiding in camouflage right now.  So, yes, it's normal to look sunburned! 

 Chicago1018- I so know how you feel.  I also feel that my whole life has been BC. Doctor after doctor after doctor.  My friends and neighbors were so kind, making a celebration the last day of rads.  I didn't have the heart to tell them it wasn't 'over' by a long shot. 

Feel good Linda!  Maybe some cold, cold milkshakes would be soothing??

 The burns are getting better and the tiredness, well, eventually I"m sure I"ll be back to warp speed.  Besides, everyone's wiped when it's 90 and humid!

Have a great, radiation free weekend, ladies!!  Rest up and pamper yourselves!

Houndmommy

Happy weekend everyone!

Three weeks down and 2 1/2 more to go!  Next week a really good friend of mine is coming for the week and I am soooo looking forward to her visit!  It will be great having someone to go to rads with me everyday.  She is going to help me freeze some meals so when the tiredness hits I'll have some easy meals ready for the family.

So far I'm still feeling good and my skin is pink/red but doesn't feel bad. Jennifer, thanks for giving us an update for what to expect post-rads.  And thanks for the reminder to those of us with mastectomies to pay close attention since we may not "feel" the pain.

Does anyone feel like they are in a fog?  I feel so out of it (and I didn't have chemo so I can't blame that).  I don't trust myself to even make decisions because I can't seem to think straight.  I seem to have some days that are worse than others too.  Wednesday was bad, yesterday and today okay unitl this evening - my youngest has strep and when I went to give him his 1st dose of meds tonight I almost gave him double the dose!  I read the instructions twice but still it didn't connect.  As I was getting the second spoonful when it hit me that I was wrong. That really scared me. I am normally very organized and on top of things. 

Enjoy your 2 days off!

Hugs, Kim

bailey1958

Hi Everyone,
Thank goodness for the weekend, my skin is more than ready for a break. I am experiencing what you are KIm, fog and with it the bone weary tiredness followed by a couple of days when I felt pretty decent - today another day of fog. I think the one bonus has been I'm sleeping long hours at night. Thank goodness I don't have to take care of anyone, I am being really careful because I did have a number of accidents early into the process and realized I was an accident waiting to happen.

Thank-you to those of you post rads - it's really good to know what's coming. I find this is the best place for me to get information, Had a doctor check-in this week - my radiation oncologist is on holidays and the doctor covering for her wasn't able to answer any of my questions - after a series of questions about hormones and the research I've been doing to find answers about balancing my hormones he said "you just need to be happy - that will give you the best chance", I actually started to cry and he apologized for "making me sad". I was actually quite frustrated and felt a bit patronized - all in all he wasn't able to answer my questions. I sure will be glad when this part is over 13 down - 8 to go.

Hope you all have a restful weekend - take good care of yourselves.

Sonia 

  

Julie50

Good Morning Ladies:

 Well another sleepless night.  Since going off my HRT I don't sleep and the night sweats are awful, but something I guess I have to live with.  

Thank you for the e-mails ladies....

YUP I get the "Fog" hopefully it goes away after treatment.

Dealing with a bad tooth-cracked it while eating a "NUT" so I have to have a root canel on the 16th had to take a pain pill the pain was so bad last night, not sure I can wait that long.  Plus a sinus thing going on.I'm a MESS...LOL

But no Rad for two days, lets party...LOL

Have a great weekend everyone!!!

J

Houndmommy

Sonia - What your doc said to you made me mad!  I don't blame you for being upset.  Overall I am incredibly disappointed in the medical community.  Between my experiences and what I read on this board, I've lost a lot of trust.  I think they give silly answers like that because we are discovering things they don't know and they don't know how to answer us.  While I am a firm believer in traditional medicine, I do think there are A LOT of  natural things we can do that will also help us.  I am shocked at the simple things the medical community doesn't tell us because they don't know.  A friend and I were discussing some of this recently and I think cancer centers ought to have integrative  medicine doctors on staff to address some of these issues.  Okay, I will get off my soap box now.  Sorry, I've had my own patronizing experiences as well and I'm getting really frustrated by it.

Sounds like I'm not alone with my brain fog.  Hopefully it will pass - I'd like to have some clear moments before I start Tamoxifen as I am fearful that is going to play with my head as well!

Julie - sorry you are having such a hard time sleeping as well as having tooth and sinus issues.   I hope they can fix your tooth sooner than the 16th!

Linda - I'm thinking about you.

Have a good weekend!  Kim

Julie50

Kim:  I have to agree with you.

I also have lyme and let me tell you, Dr's have no idea how to treat it except here are 30 days worth of abx's and you will be FINE---NOT---Its been 3 years.  Yes I'm doing a lot better, but I found a "Natural Dr" that put me on my road to wellness with my lyme.

I like the girls where I go for Rad. but everytime I say how I feel they either say "Normal" or "Not Normal".  Like my chest feeling heavy, FOG, not sleeping (which I know is going off the HRT) asked about something for the night sweats, was told to see my Ongo Dr. you go around and around and around....

And I have 5 more weeks...:(  Today I have those shooting pains was told "NORMAL" which I am sure they are, but EXPLAIN IT PLEASE (to them not you)...LOL  So Jim is coming with on Monday, he will not take any crap.....

I'm usually good at getting my answers but my mind just is not with it the past month.  My sisters death beat me up pretty hard and putting mom into a nursing home...

Ok, those are my complaints for today...LOL  Tomorrow is another day...:)

Have a wonderful week and rest---

Julie

Houndmommy

Julie, I have found I get treated a bit differently when my DH goes with me.  My DH went to the initial surgeon visits with me.  I liked the surgeon and thought we had a good repore.  At my follow up visit after surgery, my SIL went with me instead of DH.  The surgeon was like a totally different person with me.  I was very frustrated.  At my next FU visit, DH came and surgeon was all friendly and attentive again.  My rad onc seems to be the same way.  I liked him when DH was with me but in the couple of times I've seen him alone, he is very different.  It frustrates me totally that I'm taken more seriously when DH is with me and blown off when he's not.  I feel as though I have stepped back into the dark ages.  I also wonder if I'm looked at differently becuase I am a stay-at-home mom.  I worked for years and have a Master's Degree but in the area where we currently live (Lititz), SAHM aren't given much respect.

I'm glad your hubby is going with you next time and that you get your questions answered.

Have a good weekend.  It is beautiful here.  Kim

luckeme

Kim,  this foggy feeling has to be normal, I hear so many women talk about it.  I don't know how much of it is from radiation, or if it is a cumulative thing - I feel like it has been medical overload on my brain keeping track of what to do, what to expect, appointments, etc.  I sure miss last summer when I was golfing, shopping, and enjoying the sunshine - but this is just a bump in the road.  Hindimetfan, we also had a neighborhood party to celebrate, and I felt funny, too.  I don't know when I will ever feel like it is really behind me, but it will get better.

I am at a clinic that has a counselor and a nutritionist on staff.  Some of you probably have the same anxiety I have about what to eat and what not to eat to keep cancer from coming back.  So many people tell me to avoid sugars and soy, and there is an entire discussion group on estrogen in cosmetics and body products, it is making me paranoid.  I will look forward to having the nutritionist from the cancer clinic give me some pointers because she deals with cancer patients every day and hopefully understands our frame of mind. 

I seem to worry more about skin spots on the rest of my body and less about the radiation zone, because at least I know the radiation is causing that.  But lately every pimple and freckle has me googling "skin cancer".  Probably just more after-cancer paranoia, I'll just go to a dermatologist to get it all looked at and get peace of mind, but I wish my clinic had a dermatologist on staff, I bet I'm not the only one who worries about this.

I am sure our fog will lift, too 

Enjoy the weekend!

Jennifer

Julie50

Question which I will ask on monday and I already know I will be told "NORMAL"...LOL

Since I started two weeks ago, my stomach is very bloated, does anyone else have this going on?????

Thanks much

J

HOT here in Chicago 90+

writer

I have not had the bloated thing but still have some digestive issues, which I think are holdovers from chemo (chemo really did a number on my intestinal system). But Julie50, yes, I have the one giant nipple... kind of creepy, but hopefully temporary! The whole breast is swollen... my plastic surgeon left the cancer side a little smaller than the reconstructed side (I had reconstruction to even me out, because they had to take out so much tissue on the cancer side) on purpose, because I guess some of the swelling is permanent, but hopefully not the nipple.

My energy's been pretty good, but last night when we were out to dinner with friends, having a good time, I just hit the wall and had to leave. I've NEVER had to do that, always rally for social things. But I'd had a busy work day and busy week, and I guess the radiation effects are building (I've had 5 weeks of it, with 1 week to go). I spent almost 10 hours in bed! I haven't done that in many many years... I'm just like my kids now! (They're 17 and 20 and can sleep forever.)

Itchy rash continues to torture... hoping to starts to fade in a couple of days, now that I'm just on boosts.

MagPag

Hi,  Maybe the fog is induced so the docs don't have to be honest, clear and respectful !?  Maddening to hear some docs are acting like automotive servicemen, that is like the dark ages.  Sorry to hear about the fog and more so the pain you're all having.  Hopefully the weekend will help. 

I did a 5 mile cancer walk today for a fund-raiser supporting adenoid cystic carcinoma which my friend has been battling for many years.  Gave me a better perspective on the trudgery of our treatment.  Beyond surgery, folks with this rare head/neck cancer have very few alternatives.  So I'm thinking I shouldn't complain too much about the long span of treatments...at least this cancer has them and they work pretty well.

Aside from that, walking and sweating took the last bit of skin I had in my armpit off.  Almost wish I had my rad mold to lock my arm up in place for the night.

Julie, hope you tooth is fixed soon...two things shouldn't hurt at the same time.  Writer, don't give a second thought about having to leave, your friends will understand and you need to listen to your body and rest. Jennifer, good idea to take advantage of the nutritionist.  Let us know if you get some good direction from them.

Have a good night.  Donna.

rocknesmom

Hi Ladies,

 Julie, you are in my prayers. Get the tooth fixed! I agree with Donna, rads is enough! A broken tooth is too much! Oh - and I also have the bloating! My doc says I am one of the 2% that gets more than a couple of side effects. Yippee. He suggested I look at my diet until I reminded him that I am on a LIQUID DIET because of my swollen throat! I was able to eat 2 meals yesterday. Back to liquids today.

Donna, there are always people with much bleaker outlooks than ours! I saw that at each of my chemo treatments. I still believe I am one of the lucky ones!

 Writer, stay strong! You are my inspiration, now that you are on boosts! 7 more full treatments for me, then 3 boosts! Keep us posted on how you are doing!

 Kim, I can't thank you enough for starting this discussion! You all have been so great to "read". I actually look forward to checking in each day!

Stay strong and enjoy your Sunday, everyone! You are all in my prayers!

Linda 

bailey1958

Hey Ladies,

Been having a restful rainy Saturday - watched movies, read and rested. My day was good for the soul - hope you all had a nice day too!

I appreciated hearing from some of you on your experiences with the Doctors you've had treating you through your healing process . My sense is many doctors are very specialized in their areas of expertise and many just don't have the time, the resources, nor perhaps even the inclination or interest in learning more about alternative ways to approach healing from cancer.   Certainly I would think a holistic approach to recovery, including immune system boosting, recovering from the standard treatments for cancer - surgery, radiation and chemo and including the next five year journey of hormones many of us are going to be on, would be a part of their plan for us. It seems that the standard treatments for cancer kick the shit out of everyone and I think it's really important to develop a plan to continue the process of recovery. It is stunning to me that many Doctor's just don't have up to date knowledge about many alternative treatments including but certainly not limited to nutrition, exercise, supplements, meditation, associated deficiencies or imbalances etc.

I have been so inspired by the many women on these boards who are so well read about cancer recovery and have used research to make decisions going forward in their lives. Whether the doctor's I meet are able to answer my questions about alternative ways to support myself health wise or not, I thank goodness there are so many women on here who have provided me with a ton of knowledge, resources and ideas about how to go forward in a way that allows me to at the very least feel like I have something positive I can focus on. I feel like the only way I am going to be able to move forward in my life in a "normal" way is to at the very least, feel like I am doing as much as possible to get well and STAY WELL. I think the most difficult thing for me to overcome is this belief that the medical model of health is the best one. Although I am really grateful that the treatments I've had are available to me, based on what I am reading, there are a lot of alternative things I can do to get healthy and stay healthy so I can support my body to keep cancer away. I know there are many women who have re-ocurances and if I have to prepare to deal with that on my journey than I want to be as healthy as I can so I am able to deal with what might be a chronic illness for me - God forbid - knock on wood!!. One thing is for sure 13 treatments of radiation down - I don't plan on cancer being my life story. I am going to do whatever makes sense and is manageable to make sure this stupid illness never comes back!

Stay strong cyber friends - we can get through this! Thanks once again for all the support this past week - it was a tough one and I am anticipating more tough days ahead.

Sonia 

Julie50

Donna:  Can't agree more, Chicago does a lot of BC walks, I told my Husband I want to go to the next one, can't wait. 

 Writer:  Please stay strong, soon this will be behind us.

Kim:  Yes thank you so much, I love reading what each of you have to say, in many ways it calms me so much.  I was reading them last night at 3:00am...:)

Sonia:  I'm with you, once all my treatment is done, I will never forget that I had/have BC, but I also want my life back to where I talk about FUN things with my family and friends.  I also think I've learned so much so if I can help one person through this, then it was all worth it.

Short story:  Last night I was woken up at 2:00am to this cold wind on my body, then I heard my sister upstairs (she passed away on fathers day in here sleep at 56, never sick, it was her heart) so I went up stairs and of course she was not there.  Went outside and there she was (an image of her sitting on the bench) it was so calming for me...So her and I had this great conversation..:)

I hope everyone has a peaceful Sunday.  I'm 2 weeks done 5 more to go....

Many hugs to all

Julie

Julie50

p.s. I'm sure they will also say its my diet also, but I eat good and I wake up with this hugh tummy, never did before...hummmmmmmmmmm.....

MagPag

Hi Julie, your story gave me chills.  So glad you had a good chat with your sister.  My mom passed away 20 years ago when she was about my age.  I think she gave me the initial out of the blue rash that made me scratch my boob and find the lump.  I've never had that clear of an image of her, but I'm glad you did with your dear sister and have been comforted by her.

Have a great Sunday everyone.  Rainy here in the Chicago area...a good day for a nap!

Donna.

Houndmommy

Julie - your story gave me chills too.  I think it is so neat that she woke you up and you were able to talk with her.  She is still with you through all of this - how comforting that must be.

Kim

eileenr56

I'm officially counting down.  I have 9 more rads to go.  2 full breast and 7 boosts.  I am so looking forward to taking a shower without stickers.  So far so good.  a little pink - not to bad.  hopefully the boosts will go ok.  every day a new adventure. 

Julie50

Eileenr56:  9 more of rads, Congrats....I have no stickers.....The put dots (3) of them on me with some ink....Yes what an adventure this has been.

Donna:  I'm so sorry about your Mom, but she is still with you in your heart. I'm sure she did give you the rash, she saved your life...  

Kim & Donna:  Today I was sitting out side and this brown butterfly showed up right by the bench, must be Sue...She loved to FLY, she worked for United Airlines for the past 19 years.   We have had this white butterflyshow up 9 days after Jim's sister passed away 10 years ago to Cancer, she shows up every year. 

So today my boop has this strange pain it in, but can live with it.  Like the rest of you, just want to put this behind me for awhile.  

Has anyone had a Mamogram yet?  My last was in May when they found the Cancer.

Sun came out in Chicago where I live, Lake Villa.  HOT 90 but loving it.

Have a great nite

Julie

spendygirl

Hi everyone - I love reading all the posts.  My awful itching has been joined by blisters.  I don't know what to expect now.  I've had 17, have 16 to go.  I don't know if they'll keep treating on top of the blisters, I guess I hope they will as I don't want to miss any treatments.  Maybe they have some miracle rx that will help.

Ya know, I thought it was odd that when my DH went to the surgeon with me, I often said that the surgeon liked him and talked to him more than me.  Totally different experience when I'm there by myself.  I guess it's not so odd, huh? 

Some days I drag my butt through the day and other days are ok, at least the fatigue is not every day.  Sure has been nice to have two days off, hasn't it?  Take good care everyone and have a great week!

bailey1958

Sorry to hear about your blisters spendygirl - I hope things don't get worse for you and you can continue through treatments. Felt very itchy all weekend and things didn't improve as much this weekend compared to how much they did after two days off last weekend. I am really excited to be done - but dreading the week given how uncomfortable my skin feels after two days off. 

Julie I was called with an appointment time for a follow-up breast MRI for December - I assume that will be the first scan I will have done after my treatment.  My cancer was on the edge of the breast tissue and outside the breast tissue that is scanned during the mammogram.  I assume that is why they are doing a breast MRI - Is that what others are having as follow-up or are you having mammograms?

Hope you all had a nice weekend. Hope it is a torture free week for you all - hang in there! 

MagPag

Hi,  Hope your Monday is going well. 

I was told to have a mamogram 3 months after finishing rads, only on the cancer side.  I asked about getting an MRI too since mine wasn't found on the mamo and the surgeon said 'we'll see'.  I can't remember her rationale.  I'd also like to have them do both sides at the same time.  Seems silly to have each one on a different schedule.

Spendygirl, how'd you make out with your blisters. They continued through mine, but I was closer to the end when they peeled.

Good luck this week, gals.  Stay strong, each day that passes means one less to go.  Donna.

changes

Hi all,

Just finished treatment # 20; 8 more full breast treatments to go and 5 boosts. What a way to spend a summer!

Spendygirl - so sorry to hear about the blisters - that sounds awful!

MagPag - I was told my first mammogram would be 6 months post-radiation, to give the radiated breast a chance to heal. However, the oncologist said there was a chance the surgeon might want one sooner. Seems kind of silly to do one breast and not both - what explanation did they give for that? I'm more concerned now about my "cancer-free" breast - the radiologist talked about 'calcifications" in it, which meant nothing to me then, but now I worry about.

Hope everyone has an easy treatment week,

Karen

eileenr56

Tomorrow is my last full breast (#23) and then 7 boosts.  So far so good.  I hope the nipple holds up for the boosts.  There's no problems there yet.  So next tuesday, I'll be finished.  WOW that went fast. I'm counting down now.

LoveCranes

Hi ladies,

Well because of my sore nipple, my rad onc decided to give me a little break and instead of the daily rads, she's going to do a couple of the boosts, then back on to the daily rads.  Since my lump was on the bottom right corner of my right breast, it will definitely give my nipple a rest.     I'll let you know how that goes. 

As for the fog head...that's me and also the fatigue.  I wanted to respond to some of the comments on this board, but I keep forgetting your names and things I want to say.  Oh well...hopefully my head will be clearer once rads is done.  Not sure about the fatigue...personally I think it's from the rads, but it could be from my kids being out on summer vacation and also having a nephew out here to visit. 

I've had the slight pains from the incisions and also some dull pain from within, I'm thinking it's by my chest wall since the surgeon said he had to get really close to the chest muscle to get a slightly clean margin.  But sometimes I wonder if it's all in my head, but according to the rads onc, she said that she's not exactly sure what it is only that I'm not alone.

For those of you with throat issues, bloating, etc, I feel for you.  I hope things get better for you soon.  And thanks for the post rads info, it's really interesting.  Take care.