June 2012 Radiation Rads

Hi Ladies!  I started on this thread a while back but I am also on the May thread since I started in late May.  I see some of my May friends here too.    I just have 5 more treatments to go and I end next Monday.  I have one male tech but gender doesn't bother me at all.  I can't tell you how many people have seen my chest!  Plus I had a BMX so it really doesn't bother me anymore.

I have TEs so I don't wear a bra at all and I'm loving it.  Plus I don't care what my shirt looks like either.  It just looks like I bought a bad bra. LOL  I have heard you can try cami bras that seem to be more comfortable. 

To those starting, I did chemo then surgery and now radiation.  The fatigue is a lot different from surgery and chemo.  It hits you suddenly sometimes.  I found it's worse if I do too much and then I pay for it the next day but I wouldn't change my plans.  I will continue to live my life and work around the fatigue.  I end up taking a long naps when I can or going to bed early.

Day 6 done. Having some breast swelling. RO said 15-20% people can have swelling after the first week. Did this happen to any of you? An Advil or two seems to help. It feels better with a tight bra on but I am sure once my skin starts to react, that is not going to work. Ordered Miaderm that was recommended on the May rads board. Will give it an expensive try. Haha. I am also surprised by the amount of people that think rads is nothing and I should be willing to just do the things I would do every summer and not have a problem with it. Grrr!!

I don't have swelling but I started having a bit of a sore throat today   Its isolated to the lower right side, so I am wondering if its from the rads to the nodes in my collarbone/lower neck.  Anyone have this issue.

Oh and my skin isn't irritated yet but it is starting to darken a little, like I am getting this weird square tan.  I had my 3 bolus today.  I hope I am done after 5 of them, It seems more than the regular rads to make my chest feel tight.  At least 6 days are done and Debbie isn't headed our way to TX anymore (so far!)  I asked the techs about that too today, they said they watch the weather and if a storm is going to shut them out they will call us and tell us a number to call everyday to check for our new call times.  Yuck   Sorry, I am kinda a baby about these storms, never had to deal with hurricanes in all the places I have lived. 

Ugh, and I am exhausted too, my fun 2 year old has been waking me up everynight at 4.  I gotta find a better solution, he is in a pack n play and I don't think its very comfortable on wood floors.  Any ideas.  He has to be "in" something though or he won't sleep just get out an play.

Hi Everyone-sounds like we are all doing well....some swelling....I have to say after day 5 I felt like I would explode! I asked the RO if I would "explode" and she asked me who told you that you would explode?? She was all worried....no one told me it just felt like it. Things are feeling better now. I have a redness over the whole area....using my aquaphor and the skin is doing well. So far so good. Today is the half way point and hoping my skin can make it! 14/28! Doing the happy dance as I get to the end of all this hard stuff. (I hope). I have to say I have two men techs and one women. At first I was bummed but they are both really professional and it doesn't even phase me anymore....the amount of people that saw my new boobs to this point is enormous so I don't think twice. My RO at Memorial Sloan Kettering said my reconstrction is the best surgery she ever saw and has shared that info with the residents so they were excited to see my plastic surgeons work. I feel l Ike my boobs are "celebrities". I am very happy after all I have been through...time to move on! Hang in everyone

First rads yesterday afternoon and I HATED it.



- They were running 1/2 hr late - will call me next time so I can stay at work longer...



- Gave me a voluminous gown to wear and I have to take it home and bring it back everyday - very inconvenient and an extra thing to carry :-(



- Got me all set up and then instead of moving my arm because it was "in the way" the tech whipped out some tape and before I knew it she had taped my arm to the arm rest and it was like a torniquette. I just spent 6 months not letting anyone take bp or bloods from that arm! My arm has felt heavy and achey since then. At the one today I will be asking that they don't do that...



- Had treatment from 3 angles and the last one was from 90 degrees directly above my breast - how can that NOT be completely hitting my lungs etc? The RO assured me she was minimising hitting my lung due to the pneumonitis so I am not sure how that angle fits with that idea. I get to see her tomorrow so will be asking.



Came home and was so grumpy (bet you can't tell) I did a 40 minute fat buster program on my new treadmill. Was sweaty after but it got rid of some of the frustration but not all the grumpiness. After 6 months of breast cancer sh...t "little miss sunshine" has had enough :-/



Jenn

My RO said she would show me but I don't see her until today so yesterday was done on "trust"...



I don't have LE but the RO did say that rads could bring it on. Don't want it to be brought on by tape strapping though :-/



Jenn

I threw a fit today, including xrays I was on the table for 40 min today.  NOt happy... needless to say my LE arm starts hurting so in between scans when the machine changes I lifeted it about 6in in the are and started pumping my fist and got a big snide, don't move from the male tech.  He got a big old... I UNDERSTAND why I'm not supposed to move BUT, my arm hurts.   The techs on the old machine said if I needed to more it was ok just to tell them.  He tried repeating himself about lining me up, and I am like you line me up between EVERY shot anyway so If i happen to move, whats the big f-in deal. I didn't say the last part, but I just might in the future.  My hand can really start to hurt after a while 20 min is ok, 30 min is pushing it, 40 min is not ok.  I guess I got the short end because my tech was by herself over the lunch break til the very end... GRRR. 

Sorry, went sleepless from like 3 on last night and apt today was during naptime so the lil man still hasn't gone down.  I am exhausted.  ugh.

I'm also only on the table for about 5 minutes, no repositioning between zaps.  I only get zapped from two angles though...don't know if that's typical.  Today they also did X-rays and in total it couldn't have been more than 8 minutes (which was good because I was desperate not to cough during that time from my nasty cold).  Sorry to hear some are having a bad experience.  I hope it gets better.

Today was number 11, 1/3 of the way done! Last night I noticed what appeared to be blood in my nipple so today I showed my nurse. She said I had an angry nipple! Anyway, my cute RO saw me today too and said to keep an eye on it for skin breakdown... He's a multi-purpose doc too. I told him I've been suffering from sinus congestion for the last month and couldn't bear to make another drs appt with my FP, so he wrote me a script for antibiotics (after checking my nose/throat,etc) for sinusitis. Maybe it'll finally clear up and I can get some sleep!



Hildy and MiniMacs - so sorry about your LE. I am super scared about that even though my BS told me not to worry with only 3 nodes removed. My PT said it didn't matter how many were removed. I ordered a cool blue compression sleeve/glove just in case.



I often wondered if we could bring our own gown/cape to wear instead of their ugly gowns? Maybe I'll ask this week. DH is having knee surgery tomorrow so I had to move my time up. They're very accommodating.

Afternoon ladies. I am so sorry that you all have such crappy techs. Unfortunatelly not everyone who works in the medical field is in it because they care. Some are just there for the paycheck. IMO they should be given bedpan duty and filing to do all day and be kept AWAY from patient care. ESPECIALLY in a field like Oncology.

Jenn if it were me, tomorrow i wouldn't move my arm and see if the tech attempts that move again. If they do I would THEN move my arm, look them staight in their face and say, "I am not a child and I am not comatose, therefore I respond to people who use their words and explain what they would like me to do." If you yank my arm again, I will have to report you to your supervisor, my physician, and request you do NOT work on my case again. I am not getting these treatments because I thought it would be a fun summer activity. This arm that you are manhandling can swell, become extremely painful and be permanently damaged if you are not careful. I would hate to see you fired for negligence all because you couldn't use your words."

If you can't say all of that then a simple, I am a patient with rights and would appreciate it if you ASKED me to move and explained what you are doing as you are about to do it. This may be your daily routine but it is all new to me. We can work together or I can request someone else. Thank you.

That's just me though..I am a big mouth and often get in trouble for it...lol And my nickname is Sassy if that explains anything hehe

MiniMacsMom, i had 4 areas for the first 6 and was on the table for about 30 mins too. Got a bit easier when it became 3 areas and only 2 of those needed xrays. Now I am on my final 8 to the tumor bed. #32 today and 4 more to go!! i am zapped for a total of 90secs...MUCH Quicker. The lining up takes longer than that.

Healing Hugs ladies!! You made it through another treatment!! Congrats. 

Denielle 

I thought radiation would be easy....Jenn-you should never be "tied" down with tape-that is totally unnecessary! They made a mold of me and my arm fits in it...hate the position-very painful but I try to think of good things and just get through it. I am half way through today....the techs are so supportive as i have difficulty getting off the table. I am an MRI tech and treat everyone like family....but not all healthcare workers feel that way. If you are mis-treated talk to a patient advocate. We all deserve patience and caring along this journey.

Hang in there everyone! We will get through this...and a little stronger and wiser.

Best to you all!

I finish with whole breast radiation tomorrow. I had so feared and dreaded it, but it's been a breeze. I must have paid my dues with 2 staph infections after my lumpectomy and my reexcision.

  I have to go away for a week next week. When I come back, they will do a boost for 5 days. Anyone know if that is more or less damaging to your skin? Your energy? Your breast?

 Thanks!

Hi Akino and Believe. I had Boost #4 of 8 today. #32 rad so far. The boosts are a lower dose and they only target the tumor bed. They have a piece of foam or posterboard with a small irregular hole cut out (to fit your mapping of your tumor bed) This is slipped onto the end of an arm or tube that is about 18in long. This is lowered to about 4in above your breast and that is how they administer it. You are on the same table you have been on but you get a pillow and a thin pad under you for comfort. My total rad is 90 secs long. Measuring me up takes longer. So the breast and axilla are not radiated at this time and they can start to heal. I am still a little tired but not wiped out like before. Could just be the last 8mos of treatments and healing that have me fatigued. Congrats on almost being done ladies!

Today I was very assertive (don't know if that's what they will be calling me behind my back though...) and when I went in I politely told the techs straight off that I would not allow them to tape my arm again like yesterday. I explained that I have spent 6months making sure that no-one does bp or bloods because of the risk of lymphodema and that effectively tourniquetting my arm with tape like they did yesterday was not acceptable.



The female tech tried to argue that they needed to do that to keep my arm out of one of the tangents so I just looked at her and said "well, we have a major problem with the plan then". Then she got huffy and said something like "well, if that's the way you want it". She then swapped out for another male tech and the male techs seemed fine and there was no strapping - although I have no idea if my arm is now being hit - but I don't think so.



The bad news is that my skin is already quite sensitive after 2 days!!!! I have marker clips left in my breast by the BS to mark the tumour bed and I can actually feel needle like pain where they are and everything else feels really tender and mildly "burning".



Oh, and I met with the RO today and finally got to see my plan. She said only 8% of my lung volume is in the field and she was really happy about that but on the picture it looked big to me - it wasn't till I was walking back to my car I realised that's because 8% of total lung volume actually means 16% of my right lung is being damaged!!!!!!



So not happy... I've lost my bright outlook right now...



Jenn

So. Techs must have gotten a talking to. They were much more concerned with my arm. They propped it up with a towelso my hand wasn't hanging down. They also checked on it throughout the treatment. The towel did help too!