March 2009 Rads Group?

So...handled chemo ok..I was very lucky in that my SEs were pretty mild.  Radiation not bad, yeah the skin did break down and some areas were sore and still a tad sore and yes I did get the fatigue..still fighting that one, but the thing that is just knocking me to my knees..go figure...I've got a damn cold and I am feeling all grumpy and pissed off.  Now you have to understand that for the last 3 years I have been taking Oil of Oregano during cold/flu season or anytime anyone around me is sick or if I feel something is trying to take hold and I always manage to avoid getting sick.  Like enought already.  Ok bitch is over...back to work.  Have an awesome day everyone.

Carol, Oil of Oregano?  Does that work?  I would have citrus every morning, kept colds away but had to stop when I got reflux (before BC).  Of COURSE you can feel down with a cold, non-cancer people can feel down with a cold, why shouldn't you?   

On another score, I had so much laughs with the radiation patients today.  We were talking about all the stuff we brought up here recently, about non-cancer friends  - one gal said she's going to write a book of quotes of the worst things people have said to her, I gave her nelia's quote and one from my brother the night before my surgery... calling from Boston asking if i had made arrangements for my son's care (gee, really, I hadn't thought of that, good thing you told me the night before the surgery, and i had already asked if he could help take care of him, him or his wife who both said they wanted to help, is there anything they can do?  But they meant - over the phone) so I said I did and he said "Well, you know you may not be coming home".  

And we were all cracking the kind of jokes only cancer patients think are funny. 

YOu gals are all so great!  I've laughed and cried and felt so hugged since my last post way up the page!!!!!  I guess I'm not over it.  It's so hard for me to look in the mirror.  I couldn't have reconstruction because of the large open place where my tumor broke through the skin, etc., so all I see is a one-boobed, maimed, awful looking chest, and I'm noticing some shame creeping into my feelings.  All along, I was a good soldier, smiled a lot,  had no issues with the bald head, and knew it would all be over soon.  But there was something about the radiation that was so barbaric for me, that it sent me into a tailspin.  And I guess that is why the "get over it" comment was so hard for me, because that was the time I REALLY needed someone!!!!!  Oh well!  I guess it has been a good lesson for me as a friend to others.  I'll for sure know that the end is NOT the end!

Rib pain is just about gone!  I'm so happy about that!  It was weighing on my mind constantly and I think the anxiousness was worse than the pain!!!!!

So if you are burnt to a crisp, have chest pains, and your ribs are killing you, please know that it will pass.  It's been 3 weeks for me, and just today the last of the rib pain is gone!  Yippee!!!!!

rdrake- I have no idea but they said I should come back in a month to check me.  I asked why, like will they be checking effectiveness or something or just to see how I am healing, check my skin.  They said the latter.  Now I am so pissed off I plan not to return in a month, but since it's been a month for you, maybe there is something about the 1 month point.  Natch, worth getting checked out- although it's probably nothing.  Another idea, maybe ask the KAK's September 2008 RADS gals who started a Hormone Therapy thread, they are really nice, and obviously, they have "been there".  Here's a link:

KAK's About to Start Hormone Therapy Group 

I told them I was sending a lot of March 2009 RADS gals to their thread.   Actually, maybe I should ask them if they wouldn't mind giving us an idea what we have coming... or where their old thread is, and we could see how they fared.  Hmmm, anyone?

nelia - is that part about no reconstruction for the whole future or just temporary until you recover enough?  Your concerns are of course perfectly valid.  Why shouldn't you want to return everything to "normal"?  If they really can't do reconstruction that's just so unfair.  Cancer is not fair.  Cancer sucks.  I hate cancer.  So then what?  In that book I am always mentioning, Five Lessons I Didn't Learn from Cancer, one of the gals decided not to have reconstruction, I think a double mastectomy.  She kind of celebrated her body as it was.  Anyway, I think that much be really unusual, and I think it's different than missing one boob.  More importantly, how about looking into what other alternatives you have to give you back the look of having boobs, to return you to your self esteem, feel like a woman, like what you see in the mirror, taunt men and get lower prices on things in stores where men are staring at your boobs... OK OK you get my drift...  Aside from the options formally known for mastectomy patients I kinda fell on some luck there.  There's a store in NYC called BraTenders, I think I saw it on one of those fashion makeover shows, and there's another one that Oprah was pumping on one of her "women wear the wrong bra" shows... I had called them for help trying to find a corset I could use instead of a bra for radiation, because I knew the underboob was a problem and that the bras (as martha was saying) rub etc... so I was thinking... corset  Bratenders does stuff for broadway shows, and men who want to dress like women (often the same thing  ) and they do stuff for BC patients because they know their stuff.  They were SO nice when I called.  For corsets they sent me to Orchard Corsets, and those people were also incredibly nice.  Natch I ended up passing on the corsets.  

I'm thinking you could give either of them a call on 800 numbers, check out their web sites and see if either they can help you or they know some place close enough to you that could help you.

Why shouldn't you regain the physique you had?  Or maybe do better?

Here's the links:

Bratenders- An Uplifting Experience 

Orchard Street Corsets 

Once I see what size I am on hormone therapy, I am going to burn what's left of the bras wrecked by RADS and buy something that makes me feel feminine again.

Watch out for that shame feeling.  It's a really dangerous thing- good for you that you are self-aware to see it for what it is.  You are such an impressive woman. 

Catherine good to hear from you

Yeah, this would be the time I think you'd start having crap happen, at least it was for me.  Antiinflammatories (Advil), I should have took more.  They really help.  So happy your dental experience went well!  Yep, I was the slug.  The fog is lifting from me and I feel so good I am afraid to accept it. Like... uh oh, better not get too happy, wait for the other shoe to drop... I am so happy RADS are over tomorrow.

I think I figured out what they mean by "awareness".  It means getting women out to get mammograms.  Fair enough, that is probably the single most important thing they could be telling people, if you had to pick one thing. Pity they have to twist up the rest of it so that the only people who actually know what it is are finding out in the same moment they are diagnosed.  Well that's just all part of the charm.

To get their cancer stages I had found interviews with the celebrities, but I just haven't had time yet to read enough on the other people. 

blue- I missed it somehow your near death experience? 

blue- oh right, of course I remember the story now.  New part is the shot gun- wow.  Well it sure is a great example of how different people handle different stresses.   Evidently, a gal who can handle being faced by a crazed person at the wrong end of a big gun can also handle cancer.  

yes, for me its clear that was your (a pro pos) interpretation of their "not purposely" and not how they said it.  A pocket full of mumbles such are promises. (Simon and Garfunkel again)

catherine- when they explained that everything inside the boob and radiation area is swollen, including the muscles underneath, it made sense about the intiinflammatories.  Like, there's two kinds of pain going on, one is the swelling and stuff inside the nuked area and the other is the skin damage, so you treat both. if you get the bumps, they become blisters and inevitably pop.  I still think I did right by pin-pricking the blisters to release the water inside, of course the nurses hate that because there is the risk of infection if something gets inside the pin hole.  Still I think it stopped the pain sooner, decreased the size of the blister, and the covering skin stays in tact until it becomes a brown sort of scab thing, which it all will anyway.  And... I have to say again, drink the frikin water.  Please

Rachel, I keep forgetting to answer your question: what's an infusion.

They use infusions for a drug that needs to be delivered directly into your blood. To do that, they need to put in an IV line - like what they did to give you anesthesia and fluids during surgery. (There are other alternatives for getting to a vein if it needs to be frequent. For example, because I was going for chemo and then herceptin for a year, I have a port - something under my skin in my chest that has a line into my juglar vein - so they stick me there rather than doing a vein stick. But for Zometa once every 6 months, a port wouldn't be worthwhile.) Then you sit there for long enough for a bag of sailine with the drug mixed in to get into your vein. I think for Zometa it would be around 30 minutes. 

I think the infusion room at my onc's place is pretty typical. Since some will be sitting there for quite a while (my first chemo took about 6 hours, the later ones and transfusions took about 4 hours each), they try to make it comfortable. The chairs are recliners with foot rests and side tables. They will bring a blanket (warmed in a blanket warmer) and a pillow if you want. They usually have some kinds of drinks (because the chemo patients need to stay hydrated). I would normally bring my laptop and work while the infusion is going in. Some people bring a friend to chat with. A zometa infusion wouldn't take that long.

Just a quick post for now because a friend has come to celebrate with me- but I had to tell y'all I got all the best news and THANK YOU BLUE your update was VERY timely!!!!!  I will explain later.

Thank you mfgibby!!!!  About time to put back the avatar of me and my boy  Happy Mother's Day MFGIBBY!

Well blue- I have joined the club.  I am over it. But, that's because I am lucky enough to be able to get over it, my cancer was caught early.

I may be over "it" but I am not over YOU (meaning everyone here).  I am not ever going to be over you, or any of the friends I met through this, or any of the friends I already had who helped me through this (and I find it hard to believe I will have time for anyone who didn't.  I... just...don't...have...the...time.)

I hesitate to go on and on about how happy I am, knowing many here are facing tougher challenges.

I can say this though, it's not like... over.  I will be taking hormone therapy and the zometa infusions for the next 5 years at least, unless there's some big breakthrough.  I'll have the hot flashes and night sweats and insomnia- I'll probably end up here at 4am... I have the email notification on, so even if this thread goes dormant for a while, if anyone posts, I will see it.  You can't lose me unless you try.

blue- i was literally sitting in the waiting room outside my onc's office waiting for the big appointment when I saw your post abotu the infusions on my iphone.  An IV once every 6 months for some minutes? (my onc said 5).  Hell, sign me the f*ck up.  THANK YOU SO MUCH.  I thought "infusion" was some much bigger process, needing a port or something and intramuscular shots yada yada. 

Some funny stuff, so i succeeded in putting on a rockin' outfit- my doorman barely recognized me, he said I looked like a movie star.  I was even wearing.... a BRA!  (ok with a bunch of adjustments and stuff)  I was so ready to see my RAD ONC or any of the staff and let them know who they had just f*cked with, but i didn't happen to see them.  So after my last RAD the tech said "now you have to see the nurses".  Ya know, the way they tell you that.  "You have to".  Really?  or what, you will take your radiation back? So I was like uh sure, I'll go after I get dressed.  Of course no intention to go. The supposed purpose was to give me discharge instructions, you know, the ones I asked for last week, the ones I also asked for on Tuesday when the doc was busy playing psycho head games with me while my burned wounded skin was open and i was half naked and wracked with pain and out of my head on painkillers?  Those instructions?  So I ran into just about all my favorite radiation chicks and we yabbed up a storm and then just as we were leaving to have lunch together my Stage III friend (I am sorry I started calling her that, but now I keep referring to her so I want you to know its the same person) ran into some kind of administrative type who runs who gets into what clinical trials.  This turned into a very interesting conversation.

For one thing I didn't that her job before BC was to file health insurance claims in some sort of capacity, maybe for another hospital.  This is part of why she knew so much about who to see when for what and boy does she know her stuff.  She has a problem that another radiation pal has, they have to go on unemployment and that's already a big reduction in money but if they are considered unable to wok for health reasons then they have to go on disability which is far far less money.  So the trick is somehow to interview for jobs you wont get so you can continue to get unemployment or to actually find a job.  Well when all this came up in their chat, it turned out that NYU is having a semi desperate need for her skill set.  The good news is that they want her to work for them and certainly can work within her treatment needs the bad news is that by the time the job would be open she'd be getting her mastectomies and really couldn't work. The main reason I am going in to such detail here is that probably others are having this employment problem and maybe they can ask at the hospital where they are being treated if they need someone with like word processing skills.  Clearly, everyone posting here has those skills.

So they were working on all this and I forget how it came up, I swear I didn't bring it up because really, I was out the door, what's the point.  But he asked me straight out about what happened with the doc and I told him, very nicely.  muahahahahahahahahahaha.  I sicced a administrator on her without even trying.... and later when I asked my onc about coming to see the RAD ONC there for followups instead he said basically the 1 month check up is BS, its for the RAD ONC to admire their own work and not to bother. 

HA!  So I hope the gal who got bruise marks a month later after gardening finds out its absolutely nothing.  I should read some of the older RADS group postings, see how they fared some months out.  Also, curiously, my onc said that the radiated skin would actully fare better in the sun than non-radiated skin because after all, it's already been trhough radiation many times more powerful than the sun's rays.

My plan is pretty much my dream plan... my radiolist wanted to see me X number of months after surgery, which worked out to August.  My onc said there's no harm  in waiting for the Tamox until September, when it starts to cool down weather-wise.  So I figure I will move the mammo to September, have that first, then the same day go for tamoxifen appt and also infusion and also gyno, all the 6 month stuff at the same time.  Meanwhile I am taking a vacation from all this crap.  Heal up boob and start working out and trying to lose weight, have a life, enjoy my kid and hang out with all my other friends, which means my real friends and my cancer friends- 'cause the other people are just a waste of my precious time.

This is the song that's been running through my mind all day, just the refrain:

The morning sun is shining like a Red Rubber Ball.

and I was surprised when I saw the rest of the lyrics, how this song almost perfectly says how I feel about my breast cancer:

I should have known you'd bid me farewell.

There's a lesson to be learned from this

and I've learned it very well.

Now I know you're not 

the only starfish in the sea.

If I never hear your name again 

it's all the same to me.

And I think it's gonna be all right.

Yeah, the worst is over now,

The morning sun is shining like a Red Rubber Ball.

You never cared for secrets I'd confide.

For you I'm just an ornament,

Something for your pride.

Always running, never caring,

That's the life you live. 

Stolen minutes of your time 

were all you had to give.

And I think it's gonna be all right.

Yeah, the worst is over now,

The morning sun is shining like a Red Rubber Ball.

The story's in the past with nothing to recall.

I've got my life to live and I 

don't need you at all

The roller coaster ride we took is

nearly at an end.

I bought my ticket with my tears, 

that's all I'm gonna spend.

And I think it's gonna be all right.

Yeah, the worst is over now,

The morning sun is shining like a Red Rubber Ball. 

Eldub- I searched for that "If I knew then what I know now"

thread but I can't find it. Please, go ahead and repost it- anyone, feel free.  What a smart idea!  Or please gimmie a link to that thread, I got some other stuff to add

DAMN- they gave me the ointment but they said that it didn't matter if I used cream or ointment, and the cream was nicer so I bought it.  Everyone who used the ointment did much better than me.  And it was free from the hospital.  I knew it, it does make a difference.  Thank you!  That's something to add to the list! 

Eldub/Linda- I searched for that "If I knew then what I know now"

thread but I can't find it. Please, go ahead and repost it- anyone, feel free.  What a smart idea!  Or please gimmie a link to that thread, I got some other stuff to add

DAMN- they gave me the ointment but they said that it didn't matter if I used cream or ointment, and the cream was nicer so I bought it.  Everyone who used the ointment did much better than me.  And it was free from the hospital.  I knew it, it does make a difference.  Thank you!  That's something to add to the list! 

I have a toddler too. On the fatigue, how have you been doing with water and exercise?  This whole week of boosts I have been fine, no fatigue.  I am religious about drinking a 1.5 liter bottle of water each day and get a couple miles walking in almost every day (usually to and from radiation)  until I got into the bad pain.

Do you have the title of that study with the Calendula and Biafine, I will try to look it up on the web. I am SO ANGRY about how that was handled.  I also spent hundreds on the creams.

... yes the worst is over now the morning sun is shining like a red rubber ball...

Rachel, The title of the thread was actually "If you knew then what you know now".

http://community.breastcancer.org/forum/70/topic/733427 

If the link doesn't work, the thread is currently about half way down the first page of the Radiation forum. Or just search on less like: kenw then know now. You can narrow the search by putting Linda's member name in.

Pat, I had blood work done just after finishing rads - not ordered by my rad onc, just the normal monitoring from my onc for taking Herceptin and being on the Clodronate study.

My red blood cells were low but my whites were well into the normal range. I know how awful low white cells can make you feel because that happened to me at the start of chemo. I hope they figure it out.

Hi Ladies,

I have not posted in a while, but I wanted to wish all the Mom's a Happy Mothers Day!!!!  Congrates to all who have finished RADS.

Diane

Hello to all -

Martha - would love to friend you on facebook, but don't know how to pm? you.  not very computer literate, i'm afraid!  glad you are doing well.

Rachel - congrats on finishing!  what a crappy time of it you had.  i enjoyed your "stupid things people say" items, and the "things only cancer patients think are funny" items.  my best friend, from whom i was estranged for a while, but who called as soon as she heard i was diagnosed and was at my side for everything after, knows i have some guilt that i caused my breast cancer by using sweet and low, and drinking diet dr pepper, and having 7,000 or so infertility treatments, etc.  so, we were out for coffee, and she grabbed a sweet and low for her coffee, and said she wanted to have cancer just like me.  okay, we thought it was funny, but noone else did.  as an aside, i infer from your posts that you went through treatments for infertility too.  did i get that right?  unfortunately, i had 2 miscarriages but have never given birth.  now, with er+ bc, never will.  i believe you used a surrogate for your son?  forgive me if i have everything mixed up!

renee - loved the haunted house analogy.  all too true!

mfgibby - i think i posted this earlier, but i also have some guilt about having had such an easy time of chemo and rads.  i worked throughout with little fatigue and no burning.  i do want new folks to know that it is a possibility that they can breeze through too, but i think a lot of it is just pure luck, good or bad, in how we fare.

tamoxifen - i have been on it for 3 weeks now, after much internal debate about whether to take it.  so far i have had only mild hot flashes and some insomnia, which moved in during chemo and never moved out.  i have been in chemopause since sept, so not feeling much different now.  the side effect i am most worried about getting?  hair thinning/loss.  it's just come back in!!!  oh, and weight gain.  vanity rules, i guess. 

nelia - so glad you are finally starting to heal.  i agree with rachel - i'm sure your sis didn't realize you would feel abandoned by her, she wanted to do something symbolic to cut your ties to having cancer.

wow, i know there was more i wanted to respond to - chatty today, i guess. 

oh - zometa infusion - i have had one - i'm not in the study, so go every six months.  i have a port from chemo too - they did the infusion in about half an hour.  i got some chills and bone aches the next couple of days, but then was fine.  i would like to be in the study, but am already doing an avastin study, so probably can't do both!

edited to add - love the idea of having melissa etheridge bc, as she is one of my all time favorite singers!!

happy mother's day to those of you who are...

sam

Martha & Pat- I missed the thing with the underwires- why no underwires? 

Martha, will definitely PM you with my facebook info.  My Stage III friend who works in health insurance is also on facebook, so I will try to hook you two up, maybe she can help? Also, before you leave Canada, buy some Canadian treasuries.  Only Canadian citizens can buy them, and they are much better than US treasury at the moment, we are in such a mess and will be for a long time. 

Linda- I updated my list and posted on your thread (thanks blue!).  I hope you like, and boy do I wish I had seen a thread like that when I was looking for help!  I actually never really found my way around BreastCancer.org, I came to March Rads I think by a google search, same for hormone therapy thread.  I am like that with department stores too, I can't shop there, too big.  I go in for a pair of socks and come out with a basketball! Thank you also for the link to the calendula.  My RAD ONC's referred to it but they didn't actually seem familiar with it.  I have to read it more fully, but i am going to look to see if there is any mention of cream vs ointment.  I switched to the cream because the ointment seemed kind of stiff to apply, and the first night i tried it I had little balled up granule of it on my boob, and figured it would irritate.  But I can see it was the ointment used in the study.  I am a bit of a mess today, I made a mistake yesterday thinking that my clearheadedness was a stable thing.  Still so angry about last weekend- wow it was only last weekend I was in hell, and yesterday I was wearing a bra (OK with Bacitracin and Vaseline bandages and gauze and t shirt swaths, but still...).  But I think I can't blame the cream vs the ointment for the problems I had, my problem was the nurse practicioner not looking under my boob and seeing the open skin, and continuing to use the cream and t shirt swatch ripping more skin off 4 times a day thinking this was what i was supposed to do...