March 2009 Rads Group?

Hello again ladies...

well here's another reason why someone might not post... too damn tired.

Not that I haven't been thinking about everyone here all the time... there's so much i want to say but I am going to try to stick to notes:

"kristifromsandiego wrote:

Rachel, thank's for your thoughts, I am pretty good about the exercise but hate to drink. After poring so much liquid in me during chemo, I have grown to hate water.  I will try a bit more tomorrow.  I also think I over did. "

okkkkaaaayyyyy this one haunted me.  As much as I can't speak to the chemo, I am compelled to speak to you about drinking water.  I'll try not to bore you with what you already know about why you should be drinking water, and how it will make you more comfortable and help your skin and your body (oops, I just did, no apology).

Maybe it is the chemo experience that makes you resist drinking copious amounts of water- but maybe it's the dehydration.  I lived in Tucson, Arizona for a while,  where dehydrating happens a LOT.  Especially to tourists and new folks who don't know the signs of dehydration, one of which is - not wanting to drink water.  We're taught to check our pee- see if it's yellow, which is a sign of dehydration. (guess what else is a symptom of dehydration?  FATIGUE.  What if all the radiation fatigue is caused by the dehydration?)  I wouldn't necessarily use that as an indicator right now, because you did just go through chemo and your body is more kinds of ways upset than usual navigation would assist, but its a frikin no-brainer that we're intentionally shooting ourselves with my radiation and it causes dehydration, and here you are feeling tired and not to mention that our bodies are like 85% water and every beauty expert will tell you skin needs water... so I say, time to start lovin' drinkin' water babe!

Tips- dont think of drinking tons of water, get a big bottle and put a rubber band around the top- I have about a dozen 1.5 liter bottles of Smart Water (my fave, I have even done blind taste tests with my friends because I was trying to break my Smart Water addiction long before breast cancer... and have you ever read the side of their bottles?  Hilarious) in the fridge.  I put rubber bands on two.  Each day I pour from the one bottle, nice ice cold water into my favorite glass and drink some.  When it's empty- or even less full, I refill it.  All day long, if I even think about drinking water, I go drink some from the glass.  If I am already drinking, I figure why not gulp?  Then I can refill the glass.  From regular Tucson dehydration, I learned that once you break the initial resistance, and drink some, your thirst returns.  

I love water.  If I bring the bottle out and it gets warm, I note what the level is and pour some cold water into the warm bottle, then transfer the rubber band to the cold bottle.  

Water is going to help you.  Water is not chemo. Your body is your friend, give it a hand.  Peeing tons of water is very satisfying.  I visualize the water is washing extra radiation waste out of my body.  Have some salty food, watch rivers on TV, turn your mind into loving water.

Feel your mouth sticky?  Drink some nice cool clear water.  That's how I like it, from my lovely french glass.  My nanny loves water, but she likes it room temperature.  She takes hers from my kid's carafe of Brita filtered water.  We both drink so much water, we'd get our glasses mixed up so she brings her own really pretty glass in this lovely case.

And it helps you lose weight!  

I slept all of today, didn't eat, didn't drink much.  I just ordered Indian food.  No surprise, my 1.5 liter bottle with the rubber band is empty. 

LOVE WATER.  TURN YOUR MIND.  HELP YOUR BODY.  

Anyone feel thirsty now?  Drink up!  I will.  Be right back. 

nelia -

Damn again.  I was so hoping the reason we didn't hear from you was because you got some very cool drugs that took the pain away.  I have some good-ish news though.  I did some research on this hypertherrmia treatment - I am sorry I lost the link but it was on the ACS site, just searched for hyperthermia and breast cancer... and your docs may be insensitive jerks but they are right about the effectiveness.  It was not for nothing that you went through that crap.

The report said that it was as your docs said, 30% more effective for your kind of cancer, really great results but required some special high tech equipment to get the area as hot as needed.  Led me to think that what your doctors were doing was kind of like an episode of M*A*S*H where they rigged up something because they didn't have the fancy machine.  The part that they missed was not protecting your skin while soaking it in hot water for an hour or managing your pain.  For that last part I do want to do them some kind of damage, even if it is just to slap them upside the head for being so stupid.  But between their planning and your endurance you may have just saved your life- you sure as hell got the most out of radiation.

On a side note, I was reading on another thread about how much one gal loved her doctors, especially one in particular, who turned out to be the kid who lived next door to me.  I wont say the name because when I knew this person they wouldn't give up their blankie in school, (I am not kidding) and when they were in their 20s they were a stuck up insensitive self-important jerk... but here another 20 years later I see this person grew into a sensitive and caring and capable doctor who has helped people with great sensitivity and talent.  Just something for me to think abotu the next time I see someone I know who is a giant ahole in "real life" but perhaps may be a really great doctor.  Funny, I ended up with my oncologist because his wife was also my family's neighbor.  I went to 4 other oncologists, but mine was always the best.  I was trying to spare him having to deal with a family friend.  Too bad for him, he is stuck with me.

So many of us feeling down, I think its the holidays.  My family celebrates both Easter and Passover and I just couldn't take the stress.  It's minor stress but schlepping a 1 year old to a family event is just more work than I prefer to take on, especially when I could be SLEEPING.   My best gal pal since I was 11 said she always wished she could get out of the family holiday stuff and I certainly have the best excuse ever.  Oh right... Cancer.  So I got out of the holiday pressure but definitely definitely have the blues.  Its just not like me to let the family down, my kid not getting to see that whole group scene...  but fine.  

"eldub wrote:-Aloe Vera and Calendula based lotions have worked a lot better (and gotten the ok from the rad doc)."

Thank you for the confirmation.  I know my rad onc is right, she's amazing.  On one hand I am really lucky to have her, on the other hand I had to walk out of another radiology department - covered in marks from simulation- to get her.  Luck was part of it, but my being a pain in the ass was most of it.  I hesitate to say how good I have it because I know being in NYC I have my choice of cancer centers (NYU, Cornell, Columbia, Sloan Kettering, Sinai- off the top of my head). I basically "interviewed" all my oncs like a job interview. I don't have 2 docs in the same hospital at this point. (I told ya I am a pain in the ass.)  Since everyone here already started RADs, there's no point to me saying stuff that wont help stuff that's already happened- but if anyone reading this has NOT been tattooed yet and/or has not started RADs yet, please pm me.  Back to my doc- she said the study showed that Calendula beat all comers.  They gave me Boiron calendula ointment, but said the lotion and cream were just as good, they just didn't have it to give away, so I ordered it.  The aloe vera I use on my own, its my reasoning that it must be able to help the skin repair itself, and it can't hurt.  I am only completing my second week, but so far its just a little itchy- more so under my arm, and red... and swollen.

"eldub wrote: The hardest thing, besides the ITCHING, has been protecting the radiated area while still playing with, holding, rocking, carrying, wrestling with, and otherwise mothering my 2 and a half year old son. "

Amen sister.  My son is 1 year old, I am a single mother.  Friday at radiation a gal brought her 4 month old baby with her.  She didn't have a nanny that day.  While all was grand- the staff went nuts over the baby, so did all the patients including me, and I was so happy I was crying when I thought that I could bring my son in his stroller and be with him all the time except the 5 minutes on the table, get my "old life" back when I didn't need nannies 5 days a week... I told my nanny and we're all set to do a dry run on monday... but... I think will not do it.  I just picture being on the table getting treatment not being able to see or hear my son, no one who's job it is to watch him, and the people who should  be watching me carefully also are supposed to be watching my son?  I already had a incident when I was voting, I turned my back to the stroller to ask a registration question- I saw out of the corner of my eye a nice little old lady was beginning to roll my son away.  I have one of those brickhouse security alarms, but even so, if i am on the table being radiated and the alarm goes off, you know I am jumping off the table- radiation or not- and going for my son.  That's a little more drama than the radiation techs signed up for...

And the woman who brought her kid told me she got breast cancer while she was pregnant.  I should have done the math anyway, 4 month old kid, she's getting radiation, I think she had a mastectomy but I was not looking.  

Not to get too deep or anything but just about every day I am thankful that its me and not my son who has cancer.  Pediatric cancers kill more kids in America than all the other childhood diseases combined- including AIDS.  Every step of the way with breast cancer, from nuclear medicine to radiation I see the kids and the kiddie toys beside the machines.   

Check out http://www.cookiesforkidscancer.org/ 

Were you saying "NO" BRCA but family cancer history?  Me too.  Mostly extended family, and not breast cancer, no immediate family.

For those who know Passover, I am saying, "next year at my family's Passover" instead of "next year in Jerusalem"

okey... shutting up now...

aren't ya thirsty?  I am... 

I said so much I thought I'd shaddap for a while, but since no one else has replied to the engineer of this train... yes, I understand your ambivalence.  My friend also is running - in FL, USA, but he just set it up and let me know.  It sounds like you are liking the idea- with the name Martha's Miracles, so why not go ahead?  I'd understand if you actually didn't want to be singled out, and my way would be to make some smartass name for it... but if Martha's Miracles brings even a little smilel to you I say go for it!

I guess that's the way these threads go... it's a March train and by mid April, most of the passengers have safely made it to their destinations.  

Thank you ladies for making this ride as comfortable and enjoyable as possible. 

Well I am on the train for another 4 weeks, so at least I know I have good company for the next 3 weeks.

Man, I am sorry about your skin breaking down. Week 2 is tomorrow, and I'm feeling a little cocky.  I better be more careful!

 Today I saw the woman again with the 4 month old.  It was her last day of RADs- and she had done chemo while she was pregnant.  She looked amazing.  I guess that was a wig she was wearing under a cap, but I swear I would have thought she never had any problem.  Her energy level, skin, appearance- amazing.  I felt like a whining piker.

Yay Martha, keep fighting the good fight! 

Hello to everyone on what I think of as "the earlier train."  I say that because I just started rads lastw eek, which makes me technically part of the April rads thread.  I decided to read the posts on the March group so I might get a better idea of what to expect as my rads continued.

You guys are a great group (no disrespecting the April group).  I have followed these posts almost like a Dickens novel!  I have noticed that Rachel was able to post her lotions that she has been using, which made me wonder what you all would recommend for lotions.  I'm sure you may have already posted this before, but my chemo brain is making it difficult to remember specific brands, so I thought I would put it out there in hope of getting a "round up" sort of response.  I have been using the Udderly Smooth only thus far.  I also bought Nelson's Calendula cream from Whole Foods originally for my scalp just in case it got sensitive after the "fall out." 

So...what brands for the cream and aloe vera would you all recommend?  Also, if you know if the things you have used were available online?  Jeez, in between zoning out just composing this, I'm re-reading it, and it sounds so stilted.  Sorry about that.  It's so sad...I've actually been a produced screenwriter...and lately I can barely write a cohesive sentence.

 Catherine

Renee--Vitamin E oil?  Hmmm, when I asked about vitamin supplements that were okay to take post chemo and during rads, I was told that any multivitamin was okay, but nothing with added or "boosted" with Vitamins A, C or E.  Perhaps taking vitamin E orally versus topically makes the difference?  Also, if I could ask...how far along on your rads are you?

Catherine

After today, I'll have one more week of whole breast radiation and then 1 week of boosts. The  tenderness took almost all weekend to go away this time so I'm glad I'm getting near the end. So far my skin is holding up really well - the pain I get comes from inside my breast and isn't too bad. Martha, how many treatments had you had when you started getting skin breakdown?

Rachel, Did you have chemo? I  almost think that rads is easier after chemo - chemo was bad enough that it feels so great to be over it and the minor discomfort I'm having from rads seems like nothing. And my chemo took 4 months so surgery was 6 months ago so everything is well healed.

I'm surprised the woman with the 4 month old could have chemo when she was pregnant. I would have thought that the chemo drugs would be a problem for the baby. Depending which chemo she had, chemo plus rads could fit in 4 months.  

Mamie, I seem my rad onc once a week after radiation (except once when he was on vacation - I could have seen the nurse if I was had a problem or question). So far, the visits have been very routine and brief since I haven't had any problems except a little pimple in the radiation area. Or were you asking about the medical onc? I'm seeing her in about 6 weeks. Since I'm on Herceptin until the fall, I would see her about every 3 months until I finish Herceptin. But I'm on the SWOG s0307 bisphosphonate study which requires seeing her every 2 months for the first 6 months and then every 3 months for the rest of 3 years. I'm not sure why you were asking.

Catherine, I was told to use a pure aloe vera gel. They suggested Trader Joe's or Fruit of the Earth. I'm using the latter, just because it was at the med center's pharmacy. I'm using Eucerin Daily Replenishing Lotion during the day and that or Aquaphor before bed. They are working well for me but some don't want to use them because they contain parabens.

I hate to be the whiner of the group, but I've never  been so miserable in my whole life.  I don't think I have much skin left at all --- it's one big sore, open, raw piece of meat!  The prescription they gave me for the silver sulphadianz. . . or something like that, is very thick and hard to get on.  You would think they would have a spray or something.  I can hardly stand clothing of any kind.  It's such a large area -- from my sternum to my underarm, and about 10 inches high -- a perfect rectangle.  The scar from the mastectomy is cracked open and every time I move is torture!

I see the Dr. tomorrow, but I'm sure he'll tell me it's bad, but just what it's supposed to do and will be getting better.  One more treatment tomorrow and I'm done!!!!!!  Thank God!

nelia- your case is exceptional.  please please stop calling yourself a whiner. you are so NOT a whiner.  what's happened to you is more along the lines of medieval torture.  While the rest of us are told not to even let our shower water hit our boobs directly, and never more than a little warm water, some are even told to only use a washcloth- you got soaked in HOT water for over an hour repeatedly and then got radiation on top of that.

It DID reduce your chance of recurrence by 30%.  It may just have beaten the cancer.  The idiotic part is that they didn't put at least a plastic sheet between your skin and the water, and failing that, that they didn't pro-actively treat and protect the skin as much as possible after treatment and that they continue to minimize your concerns and they continue to fail you on pain and skin management.  

I think it's that they love you so much, as do we, that they hate your cancer so much that's all they can think of.  It's quite stupid on their parts, although otherwise they are pretty smart.  

You are NOT a whiner.  Not by any standard. Please keep posting whenever you feel up to it.  And PLEASE do not be shy with your docs about the skin and pain management.  They must do more. 

Neila, you are definately not a whiner - I saw that picture you posted of the damage around the scar. I'd be complaining if my skin was like that too. Our bodies are all different in how we react to these treatments too. Some luck out and have an easier time.

Rachel, why do you slather the lotion on your arm to the elbow? Isn't your arm well out of the field. They sometimes adjust my arm postition to make sure it is out of the beam area. 

Yes, I expect brand doesn't matter on the aloe vera gel as long as it is relatively pure aloe (the "100%" Fruit of the Earth does have some other ingredients on its ingredients list). I think they just included the names of a couple that they knew were easy to find around here.  On Calendula, the instructions I got said to not use brands that have sesame oil if you have nut allergies.

I hope it goes well bringing your 1 yr old on Thursday. 4 month olds are more easy to take along everywhere because they aren't very mobile on their own - and it helps that they weigh a lot less too. My grandkids are 2 months and 2 years. 

SWOG S0307 has three arms. One is a Zoledronate infusion but I didn't get randomized to that. The other two arms are daily pills, Clodronate and Ibandronate. I got randomized to Clodronate.

Sam- maybe the Diet Dr P was just as good as drinking water?  I don't know if it has to be water per se... but drinking lots!!! 

FANTASTIC that you made it through so well

 Avastin is new to me, gonna have to look that one up!

Martha, I am amazed you'd even think to include me on your shirt.  I feel lucky enough being a passenger on your train   thank you  

Hey Nelia...please girl you are not a whiner..you are going through so much and letting it out is a good thing.  Hugs and love to you.

I finished today, I had tx #33!!!!! I am so excited. I can sleep in a little, the kids will be happy they will get an extra hour of sleep! We are celebrating with dinner out tonight. The people at the cancer center are probably celebrating too, it will be peaceful tomorrow morning for them w/o my kids there.

Good Luck to all And God Bless!

Mary

Mary!!!!!  That is so great!  Hope you enjoy that dinner!  We could celebrate together.  I finished my last one today, too.  I'm actually surprised that I went, but I did it just so no one could ever say I didn't see it to the end.  I'm a mess with the burns, but soooooo happy that it's over!  I just about ran out of the place, stopped for a Whopper and a milk shake, and sang all the way home with catsup and mayo dripping down my face!

YAY YAY YAY Mary and Nelia!  Congratulations on your graduation(s).

My last day should be right after Mother's Day, and right before my birthday.  So tell me please ladies, are you too fatigued to celebrate?  Sounds like you're both ready to go dancing!

Mary- any tips for bringing the kids ? My first day of that tomorrow.

Nelia- I just read your blog, most recent posts.  I can't even figure which is north or south from the picture.  True enough, the people I meet at radiation always always give me some new perspective.

There's a book I should read there, everyone who reads it is smiling, its called "Cancer Vixen".

And walking home there is always so much yummy food- mmmm, Nelia, I love the image of you driving with the Whopper juices and stuff all over your face... girl you crack me up.