Winter RADS 2012 Club...Please come join the fun!

heidismom

Andrea, you can do it, keep babying that skin and tomorrow is TGIF!!!!! And you'll be done next week, lucky duck!

Andrea623

Thanks heidismom! Part of my pain is in the area where I still have nerve pain from the mastectomy. It didn't feel good before rads, and it really doesn't feel good now! I take gabapentin for it, but I can't take high enough of a dose to knock out the pain. It makes me a zombie if I do, and that wouldn't go well at work. I am excited to be almost done. I'm tired of walking into a building that has CANCER CENTER on it in big letters!



Today I was talking to the techs about how red and painful some areas have become. One said, "Well, I hate to tell you this, but it's going to get worse before it gets better!" They mentioned my skin might open up. That scares me, so I'm really glad tomorrow's Friday, with 2 days off after that! I really don't like when people start a sentence with "I hate to tell you...." I always feel like saying, "Then don't tell me!"



A warm welcome to all of you who are just starting! Regarding the fatigue question, I started feeling it during my second week. I'm now almost through my 4th week and yes, I'm dragging! I didn't need chemo, so I can't compare the two, but I'll bet some of the other women here can. Ironically, I'm fatigued by am still plagued with chronic insomnia. I was hoping to at least get a good night's sleep out of this!

And I can't wait to start shaving my armpit again!

cowpower

Mom24boys, Welcome to the rads club. I get 21/33 tomorrow, and so far no fatigue, just getting toasty. I wonder if its because we get so knocked down by chemo that anything else feels better. Hoping you have minimal side effects and that your treatments go by fast. I am so far finding it much easier than I thought it would be.

elimar86861

Wow, not counting the Canadian protocol, there are a lot getting just 20+ rads.  Is everyone counting boosts in their total or not?  I had 26x, but then had 7x boosts, so 33x total.

This time around I have 25x and just found out they added 3x boosts to that.  I am 4/28 now.

For anyone starting this week (again, not the Canadians,) we will only have to go 4 times on Xmas week and 4 times on New Year's week.  You will be surprised at the relief of getting an extra day off, and extra day of healing.  The best is getting a three day weekend but, hey, I'll take a Tuesday.

Also, for those getting near the end, but who will finish before Xmas, if you are really feeling the soreness and the burn, try asking your RO for a Friday or a Monday off.  When I did my breast, it fell over Labor Day and that extra day let me heal more and felt so good so that when I got to the end of my fifth week and really hurt, I just ask my RO if I could have another 3-day weekend.  He was o.k. with the scheduling; and in the grand scheme of killing cancer it really makes no difference at all.  What a difference a day made!

cider8

Is it wrong I can't keep up with all the names and stats here?! Welcome to new faces. This thread is sustaining me right now!



The cape cannot be envied! All they provide are capes at my rads facility. I feel silly in it. It feels short vs a gown; it goes to my waist. And then it's sort of crappy because it has two sets of ties that are supposed to be in the front. But the fabric gaps above and below the ties, so I still feel exposed. I suppose it's easier to deal with than a gown. I just laid down on the table and the techs untied for me. No messing with taking arms out or whatever. They put a warm towel/'baby blanket' on my breasts in between. I don't now if that was just because both the X-ray and treatment took a while or they will do that each time. I guess I will find out tomorrow!

cowpower

Cider8, ok, so you get a cape AND a warm blanket? WOW! All I get is valet parking, and since a couple of the kids parking cars are friends of my son, I end up baking them muffins because they are freezing their butts off. Plus, all our gowns are shopworn, most with the bottom ties missing. Let us know if the level of true luxury and glamour at your center was a fluke yeasterday or standard procedure.

cowpower

Oops, I forgot we also get oldies music. Its just like the movie Ground Hog Day because the station is on a 24 hour loop. If your appt is at the same time every day, you guessed it, same music! I crack up every time:) Right now, my first song is Rockin Around the Christmas Tree....

Andrea623

And here I was picturing a super hero cape in my mind! Our hospital gowns are all fairly new. I just wish they came in different sizes! No warm blankets here either. I take my arm out of the right sleeve and all I get is something that looks like a cloth dinner napkin to drape over the boobs!



I don't know what music station they have on, but it really needs to be changed! Same thing all the time. Wish we had music preset to our preferences!

terrikoala

Outdamnedspot

I am stunned that you are pink already. I am sore but still barely pink after almost 3 weeks. So sorry that has happened.  HOWEVER I have this patch of red that hurts above my breast and it showed up late last week. Yesterday was doctor day so I showed it to her. Its radiatiion burn as I suspected. She said the upper chest is thinner than the breast and if it has been sunburned before it tends to be more sensitive. She said it will get worse before it gets better and to use cortizone cream so I will.

Just remember to keep your boob moisterizied....aloe gel is not going to do that. You need one of the recommended creams.

Terri

terrikoala

heidismom,

If the aluminum has hurt us over the decades its too late now but I don't believe it anyway. Even though many ROs are saying we can wear regular deodorant I suggest not putting it on within 3-4 hours before treatment just like with anything else we use on our skin.

Terri

terrikoala

I was told that on my 16th day (next Tuesday) of the Canadian I would have a special appt and then a boost. I asked to hear more and was informed that I would be going thru Sims again to narrow down the field to just the tumor area and then would have 3 boosts. I was not thrilled about another Sims session. The therapist did tell me that there was a question mark next to it in my plan and to ask the RO to finalize it. Fortunately yesterday was doctor day and I asked. She went over my entire file about the surgery, margins, blah, blah and said due to the amount the surgeon took out with the second excision (he took some and then went back and took more in same surgery) and the wide margins and absence of the DCIS and the calcifications ...I WOULD NOT need the Sims or the boosts! I almost kissed her. SO....next Tuesday is the last day for sure. Not sorry I had the Rads  but so happy its OVER.

Terri

momtopiglet

Hi everyone- today will be day 24 of 35 for me, so almost done! yay me!

The biggest thing I'm noticing right now is I'M. TIRED.  I hate to even say that, because then I feel like a wimp, when I know lots of you have been through so much more than me.  Then I feel like even more of a putz when I go to radiation  and I see so many people with much worse problems.....elderly gentleman discussing his stage 4 lung cancer?  check. 

Anyhow, fatigue started gradually about two weeks ago and has snowballed since then.  I try to find time to just lie down on the couch in the afternoon, but with four kiddos (14, 13, 10, 5), it's tough.  The oldest is in middle school, and the other three are homeschooled.  I think trying to get them to all of their activities is really killing me.  Not too many people know about my cancer dx, and I hate to use it as an 'excuse', but I've regretfully had to abandon some commitments and discontinue others because I just can't spread myself that thin.  Does anyone else feel guilty about using cancer as an 'excuse'?  Maybe it's just me.  Any moms around here homeschooling? How is everyone handling the fatigue and the kidlets and the activities etc.?

I feel really weird about 'telling' people about it, too.  Anyone else weirded about by this?  Should I be in a different forum for that discussion?  Other than close family and friends, the few people I've been 'forced' to tell (for various reasons) have had reactions all over the board, and it's not too fun. Mostly I end up reassuring them that I'm fine.

I've noticed that the tiredness (for me, anyhow) isn't necessarily 'sleepiness'.  It's more like 'heaviness', and like I just need to sit down, except all the time.  It's also making me crabby.  I was helping with my son's cub scout pack meeting two nights ago, and usually I really enjoy that, but I noticed by 8pm, I was feeling pretty annoyed at the boys and wished they would all go home, which is really unlike me. (At least, for the most part).

I didn't have to have tattoos; my office does permanent marker and clear stickers on top of it.  In fact, that is the default option; you only get tattoos if you really want them and you ASK.   The bad news is- you can't really use any moisturizers or lotions on top of them, because it will cause the stickers to come off.  The good news (for me, anyhow) is I only have mild to moderate redness.  

I really like the radiation oncologist's office, though; from reading about everyone's experience, I guess I really, really got lucky on this one.  It's only about 25 minutes from home (the closer of two offices).  The staff is very nice, and has never run more than 10 minutes late.  AND they have three different kinds of warm cookies in the waiting room!  Seriously!  As well as coffee (I don't drink coffee) and candy.  They also have wi-fi, so I can play on my phone while waiting.

I was also reading about the hideous gowns/ capes some places have.  This office has the best gowns EVER.  I know that sounds weird, but for being an odd color of green, they actually manage to be somewhat flattering.  They are easy to put on and off quickly, and are nice and long.  No missing ties, no ties in inexplicable places, no extraneous sleeves, and nice, thick fabric.  It's the little things, right?

Anyhow, that's my experience so far.  I'll finish up rads right after Christmas.  If anyone around here happens to be doing this and homeschooling, it would be super-cool to chat.....otherwise....sorry for the extra-long post!  Good luck and Merry Christmas to everyone!

sonson

momtopiglet-I feel weird telling people about my diagnosis too.  I normally wear a wig to work and I get some comments about my hair and how it's changed, but I usually don't say why it's changed.  I have told some people at work.  The ones who need to know, but the ones who don't need to know they just think my hair is different and they don't really know why.  I don't like the reaction I get from people when I tell them.  Because you do get mixed reactions and you end up either reassuring them that you will be alright or you feel bad for telling them because now they feel bad for having asked about it and keep apologizing to you.  Every now and then you get a person who knows how to say the right thing, but most of the time people don't know what to say.  I guess that's just normal, but to avoid the awkwardness I'd just rather not go there so I don't say anything.

My kids are teenagers and can do most things for themselves so I can't answer to the rest, but don't feel bad for being tired.  You feel what you feel and everyone is different and reacts differently to treatment.  Just because you may not have gone through chemo doesn't mean you can't feel really fatigued going through the radiation.  You feel what you feel...don't feel guilty for it. 

The gowns at our clinic are kind of hard and rough.  I liked the gowns at my surgeons office.  They were cotton and so worn that they were extremely soft.  But these at the RO office are hard.  And why does it always have to be freezing in these places?  And why can I not ever have a hot flash when I'm freezing to death like that?

Welcome mom24boyzs you and I are about on the same schedule.  I start Tuesday on my first of 33 treatments.  This is gonna be so much fun!  Man, I really envy you guys who are almost done...burnt skin and all!

Lifeonitsside

When I tell people about my diagnosis, I keep it light and just say I'm in treatment and it's tough but I'm getting through it and then move on. Sometimes, I think there is a shame that goes along with having cancer and that we feel compelled to stay quiet about it. But I find the more I talk openly about it, the easier it gets. I have a wig but I rarely wear it. But then again, I've been told I rock the shaved head thing. The more we hide it, the more power we give the disease. And of course people don't know what to say. Just realize they mean well and say thank you and move on. And if they want to get into a detailed conversation and you don't feel like it, just tell them you appreciate their concern and maybe you can find another place and time to talk about it. That's my two cents.

fhny2012

Wait, warm cookies?!?!  I am at the wrong radiation center!  That sounds amazing. 

Today is 10/25.  Hot, red, and itchy!  I can't wait for this to be over...scary to know I have three weeks left and I'm already uncomfortable.  Just trying to get through it, at least the holidays are a distraction.

Hope you're all feeling good today!

Chickenlady

Well, I'm sure you will ALL want to come to Wisconsin for your rads when I tell you about our gowns...some folks made these nice fleecy ponchos that we wear.  I carry mine in and out every day. It's red with a snowman print, and a little lacy collar and even a POCKET smack dab in the middle. Pretty spiffy, actually. Today is my halfway point. My RO has me on the canadian plan.. so I guess I'm havin 17 with 3 boosts at the end. I'll find out more about the boosts next week when I see her (while I am wearing my spiffy poncho!)

have a good weekend folks! 

chickenlady

cowpower

Chickenlady, That' s awesome about the gowns, looking to relocate! I wasjust at tx, 21/33. I had a gown issue today, as a matter of fact. I was trying to tie it behind my head- no mean feat with 4 compression bandages on my left arm due to lymphedema, when Inoticed something was bunching up around my neck. Sice I couldnt see what it was, I asked the rech- old chewing gum stuck in the fabric. YUCK! What I wouldnt give for a nice cozy poncho.



Momtopiglet Never feel like you are using cancer as an excuse, its just a fact for now that some things might slide a little. You need to let youself be less than perfect right now. I know, easier to say than do. I have not kept my diagnosis a secret, impossible anyway in a small town. The only problem I have is once in a while somebody will say something along the lines of, "At least it was caught early and you're not like in stage 3 or anything." AKWARD! The nice thing was that the school comunity brought us suppers for six weeks after my surgery. It was really touching.

fgm

Just got done with #2 out of 33.  Thanks loveofcrit, I do feel better.  

Yesterday, I had to wait an hour.  The techs kept coming out to apologize.  They didn't have my info in their computer and they blamed it on the physicist. But they knew I was coming. Also, right before they finally took me, they took an emergency case who threw up all over the platform. Poor guy! I wasn't looking forward to walking into the room but it was all cleaned up when I got there. Great way to start off .  Today, as soon as I walked in, they took me.

Have a great weekend.

Cookies for the patient. How nice!! Today when I walked in the tech was carrying a bunch of pastries that she had no intention on sharing.

Outdamnedspot

Had number 2/16 yesterday and still pink.  The techs are keeping an eye on it and I am hoping two days rest may help.  See the RO Tuesday.  Really hoping it does not become too big an issue.

I wanted to mention a journal I found in the waiting area.  It was started by a woman finishing rads and she had a note in it encouraging anyone who was reading it to leave whatever they felt like writing.  It was beautiful to read.  Lots of inspiration and love from patients, friends, spouses, relatives, caregivers etc.  

Maybe this is common and done in lots of places, I don't know.  But I sure enjoyed it.

Hope everyone has a great weekend.  Moisturize, moisturize and moisturize some more!

sonson

So I noticed that my arm that had the nodes removed is a little swollen and tight.  Ever since having my last chemo treatment my muscles have been tight all over my body so that includes my arm and that arm is especially tight, but I can still move it and still have a decent range of motion (although tight), but I'm wondering does the swelling indicate that I have the dreaded lymphedema?  Should I be worried?  Or is all this just normal and I just haven't noticed it until now?  I did mention it to my RO and he said something about having it measured and that my range of motion was adequate and that he could refer me to a specialist but he didn't think it was necessary at this time.  I'm really more worried that radiation will make this worse.  Will it?  Does anyone know?

momtopiglet

Wow chickenlady- fleece ponchos?  that sounds pretty cozy! I don't know why the RO's office is always cold.  Mine's like that too...... the place I go to is very, very modern-looking, with cement floors, walls, etc.  I think they're trying to make all the cement/ steel  sort of 'blend in', since it has to be there anyhow, to shield the radiation.  Hence, everything is pretty cold.  (Ok, that's my unofficial reasoning, anyhow.)  

Sonson- I have some swelling on my right arm where the lymph nodes were removed as well.  The swelling has never gone down below a certain point, either.  My range of motion is just fine, but I'm interested in hearing what people say, because it's really annoying on that side.  

elimar86861

sonson, You do have lymphedema, but probably not Lymphedema (LE.)  No that is not crazy doubletalk.  The tissues on your rads side are taking some damage.  The body's response is to send extra lymph fluid to the area, as it does to promote healing, and you may have this feeling of swelling and hardness lasting some months after you complete rads.  I had it for 4 mos. post rads, it gradually resolved and I have not had any fluid build-up since.  At about two mos. out of rads I did go for PT to help circulation in the area, and to break up scar tissue, soften undisolved internal stitches, and to prevent adhesions.  This is what I would suggest that you do once you are finished. 

When you read about women with LE, it is usually for cases where the swelling did not subside gradually, after treatment, by itself, or where things were o.k. for a while with no swelling, but then the trunk or arm started to puff up on its own as the fluid returned to the area.  Of course, just mention it to your doc at next appt., just to confirm.

The tightness is an unfortunate by-product of rads.  In a very non-scientific way, I think of it as a "micro-scarring" of the tissues.  The tissues getting rads do lose some of their former elasticity and often that is a permanent S/E.  I have stretched my arms/pecs for three years now, have full range of motion, and still my rads side is just a little bit tighter. 

Lifeonitsside

So the swelling in my neck is a concern to my RO. He wants to postpone rads a few days until we can get a CT scan done, possibly over the weekend. Hoping it gets done sooner than later so I can get back to things. He didn't say what it could be or if he's really worried. But it's concerning when the doc frowns and says, "hmmmm" a lot...



Crap. Was starting to pull out of the blues and now I'm back into it.



Crap.

fgm

Sonson-I saw a LE specialist before I started radiation because I had 31 lymph nodes removed. She was great.  She taught me how to self-massage, stretch and exercise my arms.  It really helped and I now have full range of motion.  She told me to continue to stretch and do self-massage throughout my rads.  So I hope it helps.  I'm on #2.  

If they don't let you see a specialist, this video may help:

http://www.youtube.com/watch?v=8SnayHG-AaQ&feature=related

dventi

@terrikoala - having the shorter protocol like you -Congrats on no boosts and the upcoming end of RADS!!!

10 down for me  5 more to go!!! have 3 boosts but they are done every Friday.. so I have 5 more tx plus a boost  next Friday..

no major isssues-  but I am lubing like crazy!!! just slightly fatigued in afternoon - I do tx on my lunch hour.. so I am working thru the tx.

mom24boyzs

I had treatment #2 today. Hoping things go as smoothly as they did with the chemo. I live in a small town, so keeping the cancer a secret wasn't an option. Plus I lost all my hair and never wore a wig or anything to cover it all up, so it was pretty obvious. Most everyone has been great, and I am surprised how many women in our small community have told me they have had breast cancer too. They have been so supportive.



I am a little worried about how tired some of you are saying you are. I teach preschool and have taken afternoons off, but now I am a little worried that I won't have the energy for the mornings!



Wow, you all get gowns!?!? They directed me to a cabinet and said they keep the cover ups in there. Well, guess what? It was a pillow case! I am rather large and, let me tell you, that covered nada! At least all the techs are women, I don't feel as self conscious about showing the boobelas or my hairy underarms, not to mention the no deodorant thing going on. Glad I've got a good sense of humor! Gotta keep the humor going or you might end up crying all the time.

Blessings!!

Loving

So I thought you lose the under arm hair? When does that happen? I have completed 7 of 35. I miss my razor and so tempted every morning to just shave once but they did tell me that I will regret it. I guess we are blessed that it is winter and not summer!



Today, the center was behind and I waited with a few women before my turn. It was awkward. One women with colon cancer was very interested in discussing SE which I really didn't care to know about. However, I was very happy that my non-stylish gown actually covers me and I get to leave on my pants!



I laughed at the music comment as I finally realized what was catching my attention every day...the same song plays!



Enjoy the weekend!!

cider8

I forgot to pay enough attention to the music; I can't recall if there is any in the treatment room. I do remember some Christmas music outside of the treatment room near the techs' desks.



Treatment two went quickly. It's so weird that it seems like nothing is happening. Makes me wonder what other things happen to me that seem like nothing, but are causing me harm! Just vague mind ramblings, not true paranoia. My breast is a little pink already. During my treatment they leave that warm towel on my chest. I wasn't marked up as much as yesterday with the X-rays. I do have a pen mark at about 2 o'clock on my breast that they cover with a sticker. Sometimes it shows.



I go to a small medical building located 10 minutes from my house. It been my one-stop-shop for all my treatment (except for surgery in New Orleans). The rads office has a little women's changing room and that is where I wait. Yesterday, the woman after me travels 2 hours for her daily treatments! And I drive 10 minutes. My doctors are part of a large hospital system that has medical buildings all over the city.



Anyone who knows me knows about my cancer. My daughters are 8 and 11. Their schools know, our church knows, my parents friends and church knows. I blogged for a little while and apparently that reached people I didn't even know. I finally stopped telling strangers who compliment me on my short hair! I tend to lean the direction of telling too many and I'm working on a nice balance. People are asking me how I'm doing and I'm mostly lying with a 'fine.' It's been dragging on too long for me and I don't want to bore people anymore. My close friends know how it really is. I'm sort of sullen and isolating, which is not how I usually am. I think I don't want to put the gloom i feel on anyone. I will perk up soon enough. Treatment is temporary. Being stuck home sick with the whole family all of last week did not help!



I hope everyone is taking good care of themselves.



Lifeonitsside, I don't like any hmmmms from the docs either! I worry about my neck and the supraclavicular area, too. The ROs really do downplay the SEs.



Regarding PT. I am a huge believer in getting PT. my experience tells me the other doctors really don't understand the benefit of PT. surgeons cut, MOs medicate, ROs radiate. I went directly to a pain doctor that works closely with a PT practice. The pain doc is a BC survivor herself and has PT treatment plans for BC patients. I have to admit, I should check if she'd like me back during rads treatment (plus I'm too tight since my last surgery), but I am so sick of doctors and medical appointments!



I also have a LE therapist. My NOLA doctor has a protocol of LE education and prevention. I got set up locally right after my first surgery. I've seen my LE therapist whenever I feel swelling. Sometimes it was just post op edema, which is a legitimate reason to see her. Sometimes it is latent LE when I see her. She's taught me a lot and I want to be as proactive as possible with preventing LE. But, again, I haven't called her to let her know I'm getting rads, because I'm sick of med appts! I think I need to limit my pity party and get my rear in gear to start dealing with the rest of my issues on Monday.



Thank you and goodnight!!

cypher

What the heck is a Sims?

Momtopiglet, I feel no guilt about using it as an excuse.  It completely sucks, and treatment is a huge drain on your time, money, energy, and health.  And we really have to focus on our health right now.  We have been diagnosed with a potentially fatal illness, ‘member?   We can make it up to people later … when we’re done with treatment.  I got really annoyed at a good friend of mine who has REALLY been there for me through this whole thing when she came by the other night and made a comment about what a mess my yard was.  Well she put it more like, “what happened??!!!”  Uh, HELLOO, I GOT DIAGNOSED WITH CANCER AND HAD TO DO CHEMO, ‘MEMBER?  However she has been fabulous overall so I’m letting it go.  Can’t you tell?  I know you dodged the chemo bullet but IMHO just because other people have it worse than you doesn’t mean that what you’re going through isn’t really major.  It’s huge.

Sonson, I can totally relate re telling people.  You summed up why I usually avoid it!  I did the cold caps and still have my hair, so that helps.  If I didn’t I was planning on getting a wig that didn’t look too much like my normal hair and telling people I got a brazillian blow out (my hair is curly).  I mean what the heck, might as well have the hair you’d love to have but don’t, as long as you have to wear a wig anyway.  (I like my normal hair but I’m just saying if you have to do a wig anyway…)

Cowpower, that’s hilarious.  Well no one needs to know the details of your diagnosis except your medical team.

Loneskier

I start my rads on Monday.  I went last night for the setup on the machine.  Last night the time I went was around the time when I will be going for my 34 treatment.  In New England in winter the weather can reak havic on driving conditions.   Last night it rained and the highway was a parking lot.  The centers policy was that I should only call if I am going to be really late and I shouldnt be having a panic attack in the car if I am stuck in traffic.

Everyone at the center was extremely nice and explained everything as they did it.  I will normally be going at 5:45 pm but they asked if I could come in at 6:30am on one day because it is their xmas party.  I just hope it doesn't snow on that day.