March 2011 Rads

Teal3Pink1

thegood5: How scary! Good luck with the draining today. I hope that relieves the pain.

Cricey: My incision scar and directly beneath it is also hard. I developed lymphedema in my breast and arm about 3 weeks after lumpectomy (lump on 1/10), so the scar is in a "valley" now. I'm ticked b/c my surgeon was brilliant and the scar area was so smooth pretty before the breast got swollen. (okay, relatively pretty, compared to the rest of my scars pretty. Under the arm scar was uuuhh-gleee..!) I went to a LE therapist last week and the arm LE has pretty much resolved except for a little cording under the arm. Now I hear that radiation can possibly stir up LE, so I have been given some exercises and massage for the arm. I was told that we wouldn't do anything about the breast LE until after rads. But wouldn't it make sense to move some of the lymph out of the way so the rads can have a more direct hit BEFORE the simulation?

Poor Windlass, that sounds horrible!

For me, the biopsy via ultrasound was MUCH easier than having the guide wire placed. (I went back to work and the office Christmas party after the biopsy, didn't hug anyone though...)  Unfortunately, I DID get a local for the guide wire, which might have been lidocaine--not sure, and the first entry with the guide wire did not hurt at all. It needed to be moved around at least 4 more times to get it right. By the second time I was thinking do I ask for more pain meds? Or do I suck it up and hope it's over soon? The tumor was tiny, but pretty deep, behind the nipple and I'm on the large side.

I called my RO's office to get a time for my simulation next week so I can put in for the time off work and I have to call again later in the week. Even the scheduling seems mysterious. I've been begging for an early morning rads time and my understanding is that at this institution, once we get assigned to a specific machine, the patient with the most seniority on that particular machine gets priority picking their time.

thegood5

thanks teal3!  Just got back from getting drained....an over 2 inch mass of fluid and he was only able to get a half of a syringe out of it...he was surprised he couldn't get more, he was doing it by guided ultrasound.  Put me on some antib's to prevent infection.  I feel so poked and prod-ed at...sternum bone biopsy yesterday, 2nd lumpectomy scheduled for Friday...oh when does this fun every end?!?  lol!  Good luck to you with everything you have coming up!

Antigua

gingerstx - Since they have not given tatoos how will you be able to loob up to prevent getting burned.

gingerstx

Antigua:  good question.   I asked them that and they said to just make sure I didn't get the stuff on my marks.  As instructed, I started lathering the ointment on right after my first rads, even though I haven't turned red anywhere and, so far, it seems do-able to avoid the marks.  I may be singing a different tune once my skin starts reacting to the rads.  :^)

LovemyLife12

Hi All-

Number  10 Rad today.. 25 more to go (5 weeks Yay!!!)

gingerstx-my hospital doesn't do tatoos either.  Can really relate to the marker thing.  No pretty spring clothes for me, well at least for 5 more weeks!..Have a great day!!!

marjie

If you don't have tattoos does it take longer to get setup?  I know I am usually in and out in about 5 minutes.

All the guidewire talk is just giving me the heebie-jeebies!!  Have to say worse thing for me thru all this was the injection for the SNB...awful.

GirlFriday

I had a $45 script for lidocaine cream for my SNB...I thought the worst part of this was the ultra sound biopsy.  The punch and the snap of the core sampler still makes my butt cringe just thinking of it!  I haven't really had pain with anything...just discomfort, so I feel really lucky.  Plus, I think I've been able to separate from my physical self and look at the science behind all of these treatments.  I concentrate on the science and work on forgetting myself.  Possibly crazy, but so far it's working!

Teal3Pink1

LovemyLife12: Congrats on having 10 behind you now!

Marjie:  In and out in 5 minutes?! Wow! That's great!  Soooooo glad I was in twilight sleep for all the SNB stuff. I can't even imagine. The things we have to do! 

I need to go to the store to stock up on my rads survival kit. So lots of lotion, Toms of Maine, cornstarch, Dove unscented... Did I miss anything? 

libraylil

First rad under my belt.  RO gave me a prescription for Radiaplex (sp).  I'm going with what he recommends unless there is some unpleasantness.Also got to see the cute little RO today.  He went over the rad plan with me and explained everything.

Windlass  my first biopsy was painless.  The Radiologist told me she did not like pain so she was going to numb it really good.  She told me not to look at the biopsy contraption but let me hear the snap so I was expecting it.  The ice queen b**ch that performed the lymph node biopsy was not so nice.  She could not understand why I said it was hurting down to my elbow. That is why I refuse to see her again.   It is horrible to expect someone the amount of discomfort you experienced.  

 libraylil

GirlFriday

Teal:  100% Aloe Fruit of the Earth brand, and soft tee's or tanks.  My RO pushes Aquaphor for the later weeks.  Some have suggested fleece matterial to cut into sections and put between you and your tank or bra.  The basic idea is, treat your skin like you're going to get a sunburn every day for 33 days plus weekends.  No fragrance/perfumes, or harsh chemicals or rubbing of the skin.  Tomorrow is day 8 and my skin feels awesome!

GirlFriday

Librarylil: They took 8 punches, because my type of cancer has finger like projections.  I just kept watching the ultrasound screen, and although the Radiologist was in training I thought he did a good job...I just didn't let myself think about how yucky the experience was until it was over.  The Rad technician was awesome.  She had me talking about books, and it was wonderfully distracting. 

LovemyLife12

marjie- For me without tatoos I am in and out in about 7 minutes.  They remark where they need it.  My mom had radiation at the same place in 1991.  She had 3 tattoos.  I was shocked that they didn't give me any.  They kept saying set up was painless.  I said "even the tattoos" They said that they didn't do them anymore because of alignment issues Go figure...

The wire biopsy was terrible for me.  The mammogram tech insisted the second wire shoudl come from the inside of my breast.  Well after the radiolist had already stuck the needdle in that side, he saw that it needed to come from the outside.  Not to mention it was one of the coldest mornings of the year, and I had to ride a COLD transport van (in my hospital gown from the surgery center to mammography, then back to surgery!!!.  ARRGGHHH..

I love to hear all the stories of what people think about during RADS.  I tried praying/meditating.  But what I do is try to count down to the second from the time the techs leave the room what happens.  Where the machine moves.  When   the beam comes on I count the seconds it is on.  Then I know where the machine moves to next and so forth.  Until the tech comes in and tells me I can put my arms down.  I don't know about anyone else but when the beam comes on it sounds like a buzzer for 20 seconds.  It startled me the first few times and I was scared I had moved"out of position" I think I jumped.  I just feel that knowing what comes next gives me peace of mind... Wishing everyone health and Happiness!!!

shooshoo23

libraylil,

 My first biopsy was horrible! When the needle went around to get the tissue I nearly came off the table (although I was in compression so I wouldn't have gone to far lol)! They gave me more numbing stuff and went back at it. It still hurt so bad I started crying and the dr (a man) said "I don't see how that can hurt, I've given you a lot of numbing medicine." Thankfully the nurse with us said, "Who are you to say if this hurts or not!" If I could of reached him I might have hit him! Everyone else I have dealt with has been wonderful. 

marjie

I vote for Twilight Sleep for everything

Lee7

I'm starting my rads tomorrow (33 tx including boosts).  What is everyone being told to use? 100% Aloe? Calendula cream? Aquaphor?

Teal3Pink1

libraylil:  Congrats on #1. Plus a cute RO as a bonus! Sweet!

GirlFriday: Thanks for the tips! Good to have it all in one place!

shooshoo: I'm in love with your nurse! That's great!

lee7: Good luck tomorrow! 

lovemylife:  I know I will be thinking "DON'T LOOK INTO THE BEAM!" while for some strange reason I will want to peek. I'm totally obsessing about that stupid beam ever since the nurse told me not be careful not to look. My husband says I'm like a 2-year old. 

Teal3Pink1

marjie: I agree! If they put twilight sleep in a bottle, I'd take it every day! Forget Ambien and Ativan. (My nickname in group is Double A.) I actually look forward to colonoscopies so I can get me some more twilight sleep!

libraylil

Shoo Shoo  what a great nurse.  I can promise you if the radiologist were having a gonad biopsy , he would sing a different tune.  If they give me crap, I give them a man part analogy. 

Tealpink  look into that beam and we'll send you with those groovy eye covers worn in tanning beds

libraylil

marjie

Hmmm I have never been told not to look into the beam....would that be the one in the ceiling that I stare at everyday????

Teal3 - we would be millionaires if we could bottle Twilight Sleep!!  I feel a business plan coming on lol.

Antigua

My Rad Tech called me today, and we made an appointment for my 2nd simulation and planning sestion tomorrow 3/9/2011.  He said it will be done in the actual radiation room.

I will have my first RT on thursday 3/10/2011.  He will tell me tomorrow how many TX i will have tomorrow.

Eloise

I would love to have the Twilight Sleep for airplane flights.  In fact, I think it could make the airlines happier if all the passengers were in sleep mode -- no need to feed them, bring them drinks, show them movies, give them Wi-Fi; no lines for the toilet, not even a danger of terrorism.  Just start waking them up as you taxi to the gate. If anyone stands up and tries to take bags out of the overhead early, that person gets an extra shot and goes back to sleep for fifteen minutes while everyone else deplanes.

I only remember being told not to look into the beam for the CT scan.  If I wasn't supposed to look into the actual rads machine, no one told me.

About what to think of while the treatment is happening -- I saw a resemblance between the rads machine and the machine at the planetarium that I used to go to when I was little, I suppose because it moved across my field of vision slowly and majestically.  So I just tried to think about the stars and the earth turning, and remembered the music that used to play during the planetarium show.  It was Ravel's "Bolero" but I didn't know it then, I was under the impression the nice ladies who ran the show must have composed it.  I was pretty surprised to hear it on the radio years later and find out it was actually a very well-known piece of classical music.  

GrandmaBubba

gingerstx - I can truly relate to the painful simulation. First treatment was awful. I was sobbing by the end. Told my RO and she was not happy that techs had not more helpful. She came in 2nd treatment and readjusted my arm supports and it is so much better now.

4 down. It gets easier each time, but they say the first two weeks are the honeymoon period. I'm just praying that my skin holds up. It took two months to heal after surgery and I had to stop fills of TE's to start rads. Hate that. I'm starting to think that my bonus (big foobs) from this horrible disease will never happen.

ElizabethAnne

Hello Friends,

I love reading all of your comments--you make me feel like I'm not in this alone!

So what does everything think of this?  I went in for my simulation session this Monday and was told that "the machine is broken."  I went back in this morning only to learn that the "machine is still broken."   It makes me want to run screaming from this facility, but it's right around the corner from work and will save me 1 1/2 extra hours of commute if I went somewhere else.  I'm supposed to go back tomorrow for attempt #3.  It's been a little like slow motion torture

Also, when I was in for the initial appt. last week, the radiation oncologist asked the tech for a box of elastic tube bandages.   They cut a piece about 8 inches long and then put it on me---it's just like a net tube top!!!  Talk about humiliating.   Apparently I am the first person since they opened six years ago that needs this contraption to keep my large breast in place during radiation (and I'm really not huge--just a D cup).   This thing is over my shoulder on one side and then over my breast on the other side.   UGH!!!!   

Not much embarrasses me at age 54, but this did.  And I get to enjoy this tube top-look for the next 7 1/2 weeks.  Yikes.   

Anyone ever hear of "broken machines" and net tube tops?  Or should I start running in the opposite direction?

crlacey

ElizabethAnne: I haven't heard of the net tube top, but I don't have much left of my once B/C cup, so they certainly don't have to do anything extra to keep it in place.

I have heard of broken machines, but within a day or so it was fixed. The machine was at the Hershey Medical Center where my friend goes for chemo.

4 down and 32 more to go. Today the doctor will be checking things out again since I am very tender to touch since starting radiation. He saw a spot the other day that wasn't there before we started so he's watching to be sure it's not an infection since it's at the surgery site.

My 7 year old DD went with me yesterday to see what happens. She's been very interested in knowing what's happening every step of the way. She's a worrier, so the more info she has, the easier it is for her. At first, she enjoyed the attention from the techs as they explained things during set up. Then they had her wait in the waiting room next to them during the actual treatment part. That's when she got bored and said that next time she'll stay home. At least now she knows that I'm not leaving her everyday for something fun!

GirlFriday

I think I understand what fatigue means now.  After my 8th appt this mornin, I walked up the stairs to my car, and as soon as got in the car I had this huge energy let down.  I just felt like someone dumped cotton candy into the car.  My  brain felt like cotton.  I'm up and moving, and working...about to bake a banana bread, but honestly, I have no motivation to do anything.  Of course that could be from a sugar crash after eating a half bag of chocolate covered pretzels at 9am, but still...I'll be interested to see if this continues...It's an odd feeling...

marjie

Hi everyone - OK got the first 5 under my belt, 28 to go.  Funny when I read the posts this morning....my machine was broken down when I went in and they had repair techs working on it.  There was 4 of us waiting which is really unusual, but we all decided we didn't want to be the first one called in after it was fixed!!  Luckily it wasn't me LOL.

Adey

eloise- love the airplane idea!

grandmabubba- glad your ro helped out, if you are in that much pain bring your arms down, if the techs have to realign you so be it, not during tx of course.  (c:

17 down, starting to pink/tan up.

shooshoo23

Eloise- LOL! I love the idea of twilight for flying! I hate to fly.

Yeah ladies I think a broken machine might freak me out a bit! 

Adey

Broken machine is a bit freaky, like when a flight is delayed due to a mechanical problem...

texasrose361

libraylil- doing good- i have NO complains on the surgery!!! went well and healed nicely!

Adey- i thought about that too- i have 4 dots though not sure if i want to do little awareness ribbons or something like that

marjie- Yeah the drive is longer than the actual visit LOL i LOVE that!

Girlfriday- i am glad you found that cyst- my sister had one gow to the size of a lemon and it ended up flipping/twisting her overy and then it died... she was in terrible pain but thought it was menstrual cramps, within a week she couldnt walk and had to go to the ER, followed by an emergency surgery to remove the overy.... As women we need to pay attention to our bodies!

katetarbill- i use wife beaters under my shirts (i am breastless) i mainy do that because the ink they use has been getting on everything!!! So far no pain or irritation on my skin...