March 2009 Rads Group?

Oh Sam, I did IVF for about 2 years and pumped the MAX female hormones- Menopure... and I was eating tofu and chugging soy milk because it was lo cal and chocolate at the beginning of last year- until I got a (crap, can't find words again, you know, the thing that isn't an abcess or cancer but its a lump they have to aspirate and the radiologist said HEY no SOY!)... there's a great page in Cancer Vixen like this, its set up like a monopoly board but all the stops are ways you might have gotten bc... and I have a little story about that as well... today I stopped in at Da Silvano, that's the very celebrity-studded restaurant owned by the fiance, now husband, of the authoress, because its across the street from one of the firehouses where I was distributing flyers for the bake sale today for CookiesForKidsCancer.org and my mommy group.  I pretty much said to the suave host, Hi, I have breast cancer (he looks away and says gee that's awful) I kept talking and gushed out something about "the wife" and her book and his face lit up.  He was a doll and the restaurant was very busy.  I just told him that there's a copy of her book in the radiation waiting room and we all love it and fight over it. He offered me a copy, I said that's OK I already bought one.  (I wanted them to buy the cookies, not give me free books...)  So he tells me she is going to be at the restaurant tomorrow, I should come meet her.  I will try.  Tonight I will finish reading her book.  So far she's just started chemo.  

Back to the IVF stuff, I would be totally happy to talk to you about all that stuff.  Here's a thought I hope helps... so while I was doing IVF in California, my friend with really serious Diabetes, I mean, really serious, it was juvenile diabetes, when I knew him nearly 20 years ago in NYC he already had lost his ability to have an erection and is and was constantly trying to keep his feet... so he was complaining about how he couldn't have a child by his own genetics and I was thinking WHY WOULD YOU WANT TO GIVE A KID YOUR GENETICS?  His father had died young, heart attack I think... and if I had known I would get breast cancer I never would have tried to use my own eggs.  What I am getting to is this- now that you know, and you clearly worked hard to have kids, would you consider egg donation or adoption?  You CAN have the family you want.  Yes, I absolutely used a surrogate- I had my kid delivered by Fedex babe.  More than happy to help you any way I can.  Girl, you can be a mother too.  Look, both of Melissa Etheridge's kids parents are "mothers" and they can't both have used their own egg and uterus!   Check out that clip of Melissa at the Grammies any time you feel down.  I still remember how she rocked the house at the Concert for NYC after 9/11.  Her voice mike died so she did this amazing guitar solo and then finished when the mike came back. I dont think that made the album.  Love her.  Love, love, love her.  

I will replay my recording from my meeting with my ONC but I am sure he said that there is actually not statistical proof of even a majority of women gaining weight on Tamoxifen.  I asked him specifically, did he mean there was no proof of Tamox causing the weight gain, or what I just said and he said the latter. Meanwhile, my GP said to watch out for water weight with Tamox.  I asked one of the gals on the HT thread if she had tried pounding the water and no salt.  Many many thanks for your update.

Oh today I met the mommy with the son who has brain cancer- and btw he looked like any other kid, he's doing great.  I forgot she's one of us cancer people but within a few sentences we hooked into that special cancer patient humor.  I had to tread lightly though, this is her kid we are talking about, not my boobs. 

 I am just at the part of the book where she's told by the nurse practicioner about the cancer diet, vegetables and brown rice, nuts and beans... and I was never told any of this.  I have heard it from other BC friends.  Is it something they are only saying to chemo patients?  

My surgeon told me flat out I dont have to worry about lymphedma, but reading Linda's "what I would do better" (ok i forgot the title, you can tell I am fading today) about radiation sounded like we could get lyphedema from the radiation?  I have the links, will read.  

Martha- you are sure you can't buy them even with working credentials and a valid address there?Thanks for explantion about the underwires, I thought it was like a health thing.  I am jealous of women who can go bra-less.  These boobs need structural support

Hear hear for the NORMAL THINGS.  Crap, how did it get to be 9pm... 

augh.  A friend is on the "Engine 2" diet and recommended it to me.  I wrote to the web site and asked if its based on soy, and explained I was a breast cancer patient who can not eat soy.  The author was kind enough to reply personally and quickly, and he said that most of his recipes did indeed include soy- but then he went on to tell me that I should go do more research on soy and how it's not bad for women with cancer...  

I wrote him back and ... well I guess you know what I said.   

Hey Rachel, sorry I have responded back...man it has been busy, busy, busy... Regarding Oil of Oregano, all I know is that it works for me and for hubby.  Now hubby is not one to try out these natural things...however, he generally gets at least one cold each winter and when he gets a cold he is in bed for at least three days with really high fever.  He's been like that since he was a kid.  Told him. why not give the Oil of Oregano a shot..what's the worst that can happen..it won't work and then you can move on.  Well, that was three years ago and he faithfully takes this stuff during cold and flu season and any other time he might feel he is coming down with something.  So far he has pretty much been cold free and if he does start to get something within a couple of days ...gone.  It is pretty strong and hot so it might not be something that you would want to try if you have reflux. 

Just catching up on all the posts since Friday..wow..lots of reading to do. 

OK I know, a lot of posts from me, but i had to let you know some good things.  I made it out to meet my friends for mother's day, even though it was late we had a great time and they were really nice.

I hope everyone had a great Mother's Day!  I finished my rads Wednesday and I was soooooooo glad to.  The booster's ( 12 of them ) were worse for me because they were right on my breast.  OUCH!  So, I am really blistered now and my poor nipple...OUCH!  I can't wait until my skin finally clears up..this seems like it has been forever. Ofcourse, it has been since March 17.  I fired my last oncologist and I will start with a new one when I make the appointment.  I just want some time off from Doctor's etc.  I know they will try to get me to take Tamoxifen, but, I am thinking .. probably NO!  I have read so many bad side effects from it that I just want a quality life now!  Well...hope all are well today and have a great day tomorrow!

Hi Rachel..the best way to take the Oil of Oregano is in tincture form and start with a couple of drops under your tongue.  Ideally you want to be able to "hold" those couple of drops under your tongue for 30 sec to a minute and then chase it with water.  My hubby puts the drops under his tongue and chases it right away with water.  Does it taste like oregano, yes but very, very strong..some describe it as hot.  My understanding is the best way to absorb the oil of oregano is under the tongue and not to mix it with anything to make it taste better.  However, since the taste has never bothered me I have never tried masking it.  You could always give it a try and see.

Sorry for the delay in getting back to you..I am still trying to catch up on all the posts!!! 

Catherine, I keep forgetting you are still going for RADS.  Sharpie only said they were not FDA approved for use on the skin - to me.  The marker said on it that is was non-toxic.  So don't worry about it, but its good you told them about the surgical pen.  It can't hurt to be safer  Besides, the surgical pen is purple, which is much groovier than the sharpies usually

If you are doing 5 weeks + 1 week boosts, this week coming up is probably going to be the worst of it both fatigue and burn-wise.  I don't remember if you are prone or on your back, I was prone and boosts were on my back, so it was the first time I saw the emitterthing.  It was weird but it was also really quick and it's superficial, so by the time you are doing the boosts the rest of your boob is healing up.

Well why the heck didn't anyone mention how freaking cool it is to  get your life back after RADS?  I didn't think it was such a burden at the time, only 20 blocks away, only a few minutes, usually on time, fun with the pals at radiation... but WOW it is SO COOL to have my whole day back, do whatever I want.  I remember being warned that it was a pita to have to go each day for those minutes, but I guess I just filed it in my cancer sucks file and went for it.  I thought it was just the fatigue and burns that were messing with me (that and the stuff with my kid).  And true enough, even though I get my day back, when I got the surprise fatigue on Sat and Sun it did mess with my day... but still.  This is a weekday.  I got a ton of crap done today.

I spent the day attending to my health insurance claims and making dr appts.  But these are not the serious heavy duty shit. (Oh i can say "shit".  Wow. Still not trying the f word.)  I made my appt for mammo in September, and right after that I go see onc to get my tamox and zometa.

I spoke to DDS, he's got a handle on the Tamox (possible dry saliva glands) and the Zometa (watching for bone issues).  That felt good.  

I have appts with 3 face Docs, just to make sure I am doing my best to preserve my skin on Tamox, I was going to go anyway around the age to see what I can do to look good as I age.

I followed up on the two minor thingies they had in the PET/CT scan (the stuff everyone is telling me not to bother with, and I promised I wouldn't but... well you know how I am)  my internist said everyone has a little calcium on their heart after age 29, and doesn't seem impressed by the possible joint disease in my clavicle... but again, I am going to go have them checked just to be careful.  But I did it Rachel-style.  I see all the face docs on one day (ok 2 days) and I just load up the appts on the same day so like between now and September I have 2 days where I go check stuff out.

Doesn't sound like fun but it was so nice to be doing what I wanted.  And I get a little "high" from getting stuff DONE.  Clearing my desk a little from the pile that has been massing.

The insomnia/dark thoughts thing is a pita.  Had it again last night, didn't fall asleep until after 3am, had to use Xanax even... and still up for a while.  But it's also PMS time.  My radiated boob is almost as droopy as it used to be.  I almost didn't bother with Bacitracin and Petroleum bandages, my boob is healing so fast from the burns. But what the heck, I got the bandages, I might as well.  The swelling is another story, still eating Advil but more like every 8 hours instead of 4.  You know what my peeling is like?  Like Austin Powers Goldmember... I thought that was SO gross when I saw the movie.  On me its just kinda cool.  

And yes, the boost area is red while the rest of my boob is fairly normal/goldmembery.  I am going to have to have the drain in my shower cleaned, I hope its just the perma things clogging it and not all sluffed skin, so gross for the maintenance guys. 

I also took more of a shower than I have been able to in ages.  I even brushed my teeth in the shower, wasn't worried about toothpaste hitting my boob.  

nice normal day pretty much.  I loved my life before cancer, just so happy to have it back, almost all there.

I am also trying to catch my Stage III friend, see when she wants me to visit.  I can sit with her at chemo, or hang out at RADS.  Anyone got an idea what would be a good thing for me to do for her at chemo? 

Just so happy  

Yeah Sam- like... just being able to have your frikin coffee.  Simple things.  Deeeelightful!

This is what my friend is like, I write her to tell her I can come do whatever,stay with her for chemo, hang out at radiation, go to lunch...  she's on a clinical trial where she does chemo and rads at the same time ... she writes back:

"Tomorrow, I'll be in early b/c my daughter has a trip to the zoo.  But wednesday I'm clear if you want to do lunch.  I'll be killing time from rads (and rads md) at 1 till an appt with legal on the 11th floor at 3.15.   I sleep mostly during chemo- the benadryl has me slurring my words like a drunk.  so I'm not good company. But let me know about wednesday  I'm in the home stretch for Rads.  Only 1 week reg rads then one week boost and then I am done   After that it will be just Chemo 2x per week" 

Like... she's worried about being good company for ME.  I'd be happy to sit there while she sleeps.  Jeez, and she has to schlep here from a distance each day.  I will ask her about the sit coms and funny stuff, I got some of those- thanks!

Hey Rachel...really glad to hear that things are getting back to normal for you.  Yes it is sooo wonderful being done with rads and when your skin finally heals..it's bliss! 

My sister came with me to each of my chemo's...she would drive me there and stay with me...we chatted - lord the two of us can talk up a storm.  If I needed anything she would get it for me and the most important thing ...she was just there.  Kept worrying that she would be so bored since we were there almost the whole day but she said she wasn't and that she really wanted to do this for me.  Talk about being blessed!

So just be there for your friend and you will just know what to do for her.

Hubby and I are heading to Vegas on Sunday for our post treatment celebration and I can hardly wait!!

Yesterday was high energy day.  Around 6pm started to fade. Didn't need xanax to go to bed, but went to bed around 2am. Today is low energy/fatigue. Lucky me, I could sleep in today, the nanny's day in.  Unlucky me, my pal who has my landline phone number, same guy who picked me up at the hospital, nice guy for sure but he called and woke me 3 times, every hour - even though I didn't answer any time.  I cant turn off the ringer on my landline.  It was SUCH a nice sleep, with my kitty cat curled up beside me, and i even managed to go back to sleep twice.  He's a bit of a nut.

argh.

Carol, thanks for the validation, that's what I thought.  I got that from Cancer Vixen.  My friend (I have to give her anohter name than "my Stage III friend" hmmmm.   She is so tiny and so strong and peppy and positive.  I am meeting her tomorrow for hanging around between her RADS and her legal meeting there.  I will make my point stronger.  I get it now from what i went through with the kid coming to radiation, that its very hard to believe someone really wants to come hang out and help, hard to accept help.  

Renee, so far my armpit is pretty cool.  I *think* my only issue now is the boost area and the overall swelling.  I *think* I am only going to peel this one time for the rest of the area... but... I have learned since... I am behind most of you, only finished RADS friday, so maybe it's' still coming for me... 

Hey Martha - my port is still in.  In fact, my onc wants it to stay in for a full year after I finish the study drug I am on.  I am so bummed.  I hate my port!  She is pushing my to get a hysterectomy, and wants it in for that.  It gives me this weird fear that she expects the cancer to come back and wants to keep the port for the next round of chemo.  Crazy, right?  When it does come out, I think they said they do it there at the office.

Rachel - I was surprised even in NYC you had a hard time finding an agency to help you get a surrogate.  I know when my wife and I did our first IVF, we had to fly to LA to have it done - we are in Kansas City and no one here would do it for a lesbian couple.  By the time we did the last one, there were places and we stayed local.  I'm glad someone was willing to help you!

I have to go in the Cancer Center tomorrow to get fitted for a compression sleeve.  We are flying over Memorial Day and J. really wants me to have one.  I put off calling so long, I'm not sure it will be ready in time.  Ugh.  Another half day off work.  I really, really don't want lymphedema though, so I guess it's worth it.

Have a great evening, all -

Heya Martha,

I didn't realize your partner became ex-partner during chemo.  That just plain sucks.  I also can't help with the port removal info- except by googling.  But I can relate to having to go to hospital alone and having to find someone to pick me up. I don't really have someone to call "in case of emergency".  One nice thing about being alone, there's no one to let me down.   

It's probably not what you want to hear, but I'm glad they will take it out at the hospital.  More safe.  Maybe over cautious, but you deserve the best care.

 It also could be closure.  You leave everything to do with cancer at the hospital.  When you walk out of there you leave all the cancer and all the trappings of cancer behind you- you are free.

 Free to move forward and leave all the pain behind.  You might even meet someone there... while you are waiting.  

The lymphedema is sticking around, but if you are going to frame "cancer, the gift that keeps on giving" I hope it's so you can throw it in the garbage.  Everything you have done is to make sure cancer does not keep on giving you any crap.

I am thinking now of all the people in my life who HAD cancer, and it never came back.  My DDS's wife had cancer in her leg when she was 9.  She is in her 50s now, never had a problem since.  My best friend's sister in law's mother had Stage III, years ago, hasn't come back.  So many people have come forward since I was diagnosed to tell me about the cancer they HAD, that I didn't even know about because it was a one-shot deal.

So... even though I didn't do chemo, I had to say this.  

You are going to the hospital to say GOODBYE to cancer.

A little Rolling Stones to keep you company:

Take me to the station

And put me on a train

Ive got no expectations

To pass through here again

--- 

Once I was a rich man and

Now I am so poor

But never in my sweet short life

Have I felt like this before

--- 

You heart is like a diamond

You throw your pearls at swine

And as I watch you leaving me

You pack my peace of mind

--- 

Our love was like the water

That splashes on a stone

Our love is like our music

Its here, and then its gone

--- 

So take me to the airport

And put me on a plane

I got no expectations

To pass through here again 

I was going to say something about how you might meet people who are just beginning, and point out how good it will be for them to see you leaving it all behind.  I withheld that because I wanted to avoid putting any pressure on you to perform- but let's face it, you are going to help people.  That's you.

Whoa, I just re-read that and saw that one of them was going through it a second time.  I am very sorry.  That must have had an effect on you as well. 

I don't know, I wasn't there and true enough there are not many who will take this ride through cancer hell with us, but again, your partner and you splitting up between chemo and RADS just  plain sucks.  The interview I read by Melissa Etheridge about her cancer was filled with how her partner (wife? I forget)  stood by her and supported her the entire time, how much that meant.  Someone here on this thread has a husband who is not supportive, and that's it's own special hell.  I guess in some ways its fair to say I am happy I went through it alone.

It is weird as all get out that these other people step up and are so glorious.  As I am thinking about the pervasive radiance of these people it occurs to me, is it possible that what you are feeling is more of that radiation-feelings of dread crap rather than just the emotional jerk back to the breakup?

I am here to testify there is some weird radiation-feelings of dread crap that happens especially once RADS are over.  I heard it mentioned, didn't realize at first it was happening to me until I started having so thoughts so awful I can't even remember them.  Nightmarish. Like pick your worst fear and dwell on it. Out of nowhere. I dunno, but that's what it smells like from here.  When I realized it was happening I took a xanax and went to bed.

We all lost a sister when she lost her sister.  Wow, what a fabulous escort you have.  That's the right person to be around now, someone who is in a wonderful loving relationship.  That's your future.

On that note (and any other) I am so proud and happy to show you this clip on wcbs of our mommy group doing the bake sale for kid's cancer:

http://wcbstv.com/video/?id=127587@wcbs.dayport.com 

These are the mommies who came out to sit with my kid during my radiation.  See, I am hanging out with the right people too!

Hi Rachel,

I will read that article that you posted about Tamoxifen.  I have just read so many scary side effects of it and I admit that I am scared of it.  I want a quality life..that is more important to me than quantity, if I have to feel like crap the rest of it.  Does that make sense?  Ofcourse, I am really down..I have been done with my rads for a week almost now and my breast is so burnt, so blistered and so sore.  I thought the boosters would be easier to it, but, they were worse.  I wonder how long it will take for my breast to feel better.  I have been putting Biafine and Aquafore on it.  Anyone else know of something better?  Thanks!