March 2009 Rads Group?

Rachel, sorry to hear about the onset of fatigue.  I was sacked with it for about two weeks.  Unlike yourself, I actually started feel better this weekend.  I think it might be a combo of the amoxycillin I started taking and the megestrol which has calmed down the flashes a lot since even just yesterday.  The fact that you were still able to give your son some fun time is impressive.

Patti, on the work thing, i agree with what's already been said, but would like to add that you shouldn't force yourself to work if you don't feel up to it.  I get hired on a day to day basis, and there were a few days where I thought I would be fine to work...and then realized that I was pushing myself unnecessarily.  My work situation is different than most since I can't control how long my day will be, but the point is that you will need to allow yourself time to recover from this.  If you can take the time off, do it.  No one is expecting you to be a superhero on that count.

Congrats to all of you that finished rads.  Man...YOU FINISHED RADS!!!!!!!

I only hope that I will be in such a great frame of mind as you have been.  You have set the bar for me mentally.

Well I just have this pile of negativity that I am thinking I should not say.  It doesn't amount to a hill of beans but there it is.  Yes, my boob was hurting this weekend, but I found a way to wrap it with the cream one of my t shirt swatchs (tis a tissue thin t shirt).  I also have been going bra less a lot on the weekends, partially to avoid getting that burn where the bra rubs.  Just sort of a change of pace of posiiton for the boob, hopig like it will not lay exactly in the same place where it folds on itself.  

I was so excited, tuesday is my half way mark, I made it this far pretty well and was just so so SO excited about being able to bring my boy to radiation.  But this morning i got the feeling that it wasn't all sorted out about someone watching him- as I had very specifically asked last week.  When I went to the social worker to double check, I saw a woman of undefined staff position who I had met before, very friendly, indeed I had emailed a photo of herself the night before.  No way was I prepared for what happened next.  This woman went off on how there's a legal liability and basically scolding and chastising me for even thinking the staff could watch my kid in the strollerwhile I was in the radiation room.  I asked her take a step back on her attitude, as I was not arguing with her, but just shocked and troubled how to sort out some last minute arrangements.  But she wouldn't let me speak at all.  This all  in front of the social worker.  It was just immature and bizarre behavior on her part.  Finally we got rid of her and I tried to untwist my emotions with teh social worker.  Finally sorting myself out enough not to cry my way thrugh the waiting room and lobby, I finished enough of my day as I could muster, stopping by lawyer's office etc.  I had forgotten my cell phone at home.  So I went home and see all these phone calls.  The first I returned from was a number at the hospital.   When I called I was put through to my rad onc, the chair of the dept, and the director of the radiation techs and this awful witch, all on speakerphone.  My rad onc went on a bit of a tear, when I didn't argue with her and answered her, no, I do not have family here, no I do not have a nanny every day, but I can get the mommies from my mommy group to come help me.  My rad onc clearly had been fed a lot of crap assumimg that I would be difficult, but I had no problem- except that I was just horrified at this colossal pressure tactic.

The mommies are just incredible, I feel so stupid for having to ask them.  My rad onc is thinking they will come late and make the schedule late and  ya know what,. that's just too bad.  Anyoneo who has anyone come to help them runs the risk of that person being late, and they made me far too crazy to come up with a letter asking these volunteers to come 15 minutes early or something.  TOo bad.   The whole scene is too much to bore you with in this post- and I was sooooo upset that I was like frozen in my chair... time passed and before I knew it it was nearly 10pm, I had not stood  up to eat, pee, or even drink my beloved water.  The poor cat was begging for dinner.  

I had all this good news, I heard from the lovely gal with the 4 month old baby, she said I could post the pics of the baby there, so cool, and I will, but I had to take two xanax just to start functioning again.  

I am furious.  Not about them not being able to watch my kid- i was the one who kept saying I didn't think they could do that all last wek- so OK they screwed up and I was right.  But this is nothing more than a power trip by a cold hearted witch who clearly twisted the pattern of events to make it appear that I was making trouble, and I swear to you I was not.

This kind of thing, kicking someone when they are down, making my life unnecessarily hard, manipulating the circumstances to bring in my doctor, condescending to me because I have no family to help me, that's what wrecks me.

My heart is broken.  But.. the mommies are really REALLY wonderful, and my kid is wonderful, and it's only 3 more weeks- and if I ever wished for no recurrence, its now magnified X3,...

 and I thought of the best revenge.  I printed out the pictures of the staff holding the 4 month old baby, because before all this mean spiritedness, I thouhgt it would be a nice gift.  So i will give them the pics tomorrow because they may be mean jerks, but I am a nice person, and they can't take that away from me.

Funny, but my boob didnt hurt.

And I am sick of being told how tired I am going to be.  If I am, I am, and I will try to prepare for that, but maybe I dont need to be that tired.

And I am going to finish my 1.5 liter bottle of water tonight- in spite of those jerks.

Thank you for the vent, sorry to be such a whiner.

Oh and Martha, I am so sorry o hear about your skin breakdown  

Bluedasher, I am impressed you got them to tell you so much about your treatment.  I am prone to avoid heart and lung, but i dont know about the slanting or straight in, and I haven't checked which kind of radiator (?) but I just assumed it wwas the newer kind.  I should ask - but I am ggoing on a bit of a strike from now on.   

Rachael....that's awful.  I would have cried all day.

My last wide angle is tomorrow also.  My skin is holding up well but my ribs and collar bone hurt.  An apparent inflammation around the bones.  I get tired on Thursday but all in all I'm doing okay.

Radiation continues to kill cells for up to two months after radiation is over.  That's why symptoms can continue after it's over.

Rachael, I am so sorry you have to put up with those friggin' jerks and that your family is not near to help support you.    This to will pass.  Stay strong.  Sending you lots of love.  Carol

Catherine -  For what it's worth, I'm through with 20 out of 33 treatments, and my skin is only slightly pink and is not really sore.  I'm finishing every rad session by dashing into the nearest empty exam room or bathroom, washing my hands, and spraying on a burn spray made of only aloe oil (not gel) and lavendar.  Then I coat the area, including as much of my back as I can, with Avalon Organics unscented aloe lotion.  

My oncologist encouraged me to cover my scars with vitamin E oil -- i can't take any orally, but it is just fine on the skin and protects quite well.  I do that when I remember to do it.  

 Also have some calendula-infused olive oil that i use sometimes near the end of the week in the evenings when i can go shirtless.  

All - Perhaps some of you are being marked up every day like I was.  The rad techs were using a Sharpie marker, which struck me as not appropriate.  I checked in with the manufacturer, and sure enough, they do NOT recommend the use of this on skin, particularly skin being damaged by radiation.  I contacted my surgeon's office, and they gave me a pen to bring to radiation that is approved for use on human skin.  Sharpies contain industrial solvents that really should not be on skin.  

Hope this is helpful.  

Is anyone else having throat issues?  My throat is not in the field of radiation, but the oncologist said there is "scatter" that is affecting me.  First it felt like a lump in my throat, making it tough to swallow (one way to keep the weight off!), now it has morphed into a persistent cough. This is not a cold or strep or allergies or anything -- i have no other symptoms and it got worse when the pollen count was lowest.  Been dealing with it since the first week.  I'm experimenting with cough syrups, but if anyone has any advice, I'm open to suggestions!  The oncologist and techs haven't got any cures.  thanks,

sama 

Is anyone's breast hot? I have a huge spot of missing skin and the breast is warm to the touch. I finished treatments a week ago and the rad doc gave me silvadene and said see you in six weeks but now I'm wondering if I have an infection. Also, and this is kind of gross, there's this snot-like stuff coming off the wound. I'm serious. I wake up and it's all over the side of my pajama top. It looks like I had a cold and blew my nose in the shirt. Sorry to gross you all out but I could use some advice and I don't know who else to ask.

FLMel, I had (still having) the same thing with the snot like stuff!  Mine doesn't smell, and I don't think I have an infection or anything.  It seems to be what's left after the creams have absorbed in, and this is just the residue, plus some of the dead skin, and the usual crap that burns produce.  If I use a light covering, such a a thin, loose bandage, it's yellowy and thick.  Also gets on my nightgown, etc.  Not pleasant at all. 

I also have that terrible pulling when I get up or straighten up.  It feels like where my stitches used to be is pulling totally apart.  Agony!!!!!

well Martha, I have been pretty tired the last two days, I just want to sleep when I get home late afternoon, just curl up in bed with my book till I fall asleep. I feel so lazy and useless, cause I have so much to do. I 'm trying not to feel guilty, cause I didn't think we were supposed to be this tired.

About the oozing, my nurse said the blisters may drain, so maybe that's all it is. But I haven't had that happen yet.

Rachel, so sorry you are so stressed. And I'm glad you accepted help. That was a hard thing for me too, especially during chemo. The snow shovelling... I expected people to actually figure out that I may be stuck and need help, but I don't think it ever crossed their minds, and instead of just calling and asking my brother and his 4 strapping sons, I struggled thru it myself, which was dumb.  Is it possible for you to bring a portable playpen and set it beside you during tx? 

Sama, I agree with you about the sharpies. My techs don't draw on me much, just little dots but it was with sharpies, I could smell it. When will these hospitals get it about toxins? Notice all the junk food/fast food available in hospitals?!  I could go on and on, don't get me started.               By the way, where did you get the spray aloe? Like Nelia said, that makes so much more sense to spray something on, rather than rub on this thick, disgusting stuff, when they tell you NOT to rub!  Also, I did develop a cough. I thought it was from my blood pressure meds, maybe not. The tech told me there is very little scatter with breast radiation, cause I asked him once why they didn't leave the room or put the lead apron on the rest of our body, like if you had an xray.

Martha, you're funny, and so lucky you have an inch of hair. I have all different lengths too, but prob the longest is about 5/8". I look like a boy!  Not a pretty site, so I'm still married to my wig,  which I'm really tired of wearing .

Diane, congrats!! I will be done next Monday, the 27th. 4 more boosts. Bluedasher, yeah, they were shooting me at an angle too, to miss my heart and lungs. I do not get radiated in my armpit, or neck or collarbone area. They are doing electron boosts on one side on the tumor site, and photon on the other side, I guess because the DCIS was located lower down, toward my nipple, and they couldn't rely on the spot not moving around from where the target was. Seems weird, but hopefully they know what they're doing .

Jessee 

Kristi, I'll finish next week too. I had my first boost today and have 4 more to go. IIRC, Martha had her first boost today and will have 8 so she finishes next week too.

I'll be continuing to get a Herceptin infusion once every three weeks until October (assuming that my MUGA results stay good) and I'll be taking Clodronate on the bisphosponate study for 3 years, but neither of those are causing side effects for me. They just improve my already low recurrence risk, but if they start to cause problems and I have to drop them, it won't worry me. And they don't alter my lifestyle like chemo or radiation.

So I'll be celebrating next week as the end of (burdensome) treatment. 

Glad to hear everyone is still plugging along! 

Martha, glad you got a good night's sleep!  I do know, though, about all the worrisome thoughts!  Hard to must "move on!"  What is that anyways????  When I "move on", all my baggage comes with me!

Rachel, give that little one a hug for me!  It was so good to read your post!

Carol, I was so so happy to leave that place, knowing my treatments were over, but anxious, too, and feeling a bit. . . . "alone."  I also found that life moved on without me since pre-cancer days.  Things I used to do are gone, people have moved on, and even my own life and thoughts and what's important to ME has changed, so I need a whole new life, I guess.  I'm sitting here every day wondering where it is I'm supposed to go, what direction and with who and to do what?????

My burns are slowly healing here.  Just a little better each day.  Always glad to see that.  The stabbing pains seem to be subsiding also.  I looked in the mirror yesterday and realized that the radiation went right through to my back!!!!!  The skin is all dark and itchy on the same side as the rads!!!!  Gees!  Makes you wonder what all it did on it's way through!

Jessee, I got the burn spray from a local apothecary called Rebecca's - http://www.rebeccasherbs.com/   

It's just aloe oil with some lavendar added.  Hope you can find some where you live.  

Most of you probably know this, but I learned that about 10% of women can't metabolize tamoxifen, so it is of no value to them.  I'm getting the blood test (don't know yet if insurance will pay for it) to find out if I am in that 10% -- I don't want to risk the se's for 2 years if it's not giving me any benefit!  My onc said that probably in a couple years they will be routinely testing, but it's too new.  

I've got two more weeks - congratulations to all of you who have finished!   

Hey Sama, me too!  I just wrote this whole nice post and managed to lose it... and i was out with a friend enjoying some wine (first time in a long, long, long time) so I can't remember what i said).

Lessee... my techs use non-toxic sharpies- but that's still bad, right?

I will have my last week end a day early so I dont have to come back after the weekend- YAY.  Weird how they can do that... one day less, ok no problem?

They will do the thing with the cutout and the cone, and I will be on my back for those boosts, but I am asking about that.

Carol- hearing that you are continuing to work inspires me to make some plans for those last weeks.