March 2009 Rads Group?

Renee, I also had all those layers of skin peel off me.  My underarm didn't seem so bad to me, but then, it is still so numb under there from the mastectomy that I don't feel much.  I was in agony, but once it started to heal up, it was fast and got better quickly!

Martha, I have to keep my port in for 5 years!!!!  Isn't that awful???  My sister had hers in for two years.  She had it taken out in one of those "day surgery" centers right behind the hospital.  They put her out to do it, then later went home. 

Everything seems to have cleared up for me.  Not even a scab left!   And the rib pain is gone, too.  I'm supposed to go for my one month check up with the radiologist, but I think I'm cancelling it.  I'm still mad at him!

Hey everybody--I had to make sure that this was the first place I went to on the soite becasue normally I save this forum for last...as my dessert of sorts.  but the past couple of days I've saved it and then I was too zonked to post. 

Rachel, I think it's great that you're going to hang out with your friend while she is having her radiation/chemo.  Wow...both at the same time.  That must be some clinical trial.  I remember when I was first dx'd, My mom and her SO offered to come out to see me to try to offer help.  I declined since I really didn't know what they could do, and I would have felt(in my own mind) a bit obligated because they "had coma all that way."  In retrospect, I made the right decision, and most offers made by people in the generic sense of "if there's anything I can do." went by without being used.  But there were a few people who called me regardless on a regular basis, or took it upon themselves to come by, and those are the poeple that had the most impact for me after all was said and done.  As for how to spend the time, I brought along my dvd comfort food which was BBC's Pride and Prejudice.  It's about 5 hours long, so I never got through the whole thing entirely, but it was nice to get lost in and didn't require so much involvement for me since I have seen so many times.

Since I changed my rads appt to later in the day, I've been making it a point to do something afterwards to take advantage of being out and about.  The thing is, I keep buying stuff.  Nothing major yet...mostly things from Target.  Wow, I didn't realize how much I liked that store.

So far the skin is holding up. There is a discernible square from where the radiation in, so it's not like there's any question of where to put lotion, but no bumps/folliculits or blistering.  Okay, typing with one hand as I knock on my head.  I just realized that I bought this aloe spray gel from this place in Colorado that was recommended on one of the forums.  It's been alomst two weeks, and I still haven't gotten it.  I'm going to call them tomorrow and play the "you were recommended on a breast cancer website card."  Not that's it's going to matter when I get it now...unless it comes arrives before the weekend.

Nelia--5 years with your port?  Wow.  That's...yeah...wow.  See, you're one the reasons why I might mention being fatigued...but I feel, I don't know...churlish...about complaining about it.  Same thing about being put on meds for the next few years.  I don't know what having a port is like, but I can't imagine relishing the idea of having it for 5 years.

I can completely see the POV of the rad onc follow up.  Thus far, my weekly "consults" comprise of the nurse taking bp/temp and heartrate.  Then she and the rad onc look at my boob and ask if I've had any problems with breathing or pain...which I haven't.  So, the meetings are pretty quick.   Hmm, come to think of it, that's a good thing.  Shutting up on that issue and taking a moment to be grateful about that.

Rachel--I hear ya on the dark places comment.  I know that you didn't do chemo, but there is something unique about radiation that brings out dark thoughts.  My personal theory is that with chemo you are so focused, metally andd physically on what your body is doing that I think you mentally just sot of shut down to "deep thoughts."  But with radiation, physically your body returns to a more normal state (or in your case, retains it), so your mind is more prone to think about the whole process.  Plus, for me, chemo was a once every 3 week thing that I had to do.  radiation has to be done everyday.  No reclusiveness while you take care of yourself.  No, you have to have this reminder everyday...and I think that takes a toll mentally as well that's different from chemo.  That's just me, since I know that other chemo regimens vary.  also, it might be different for others who have managed to work during all of this.  I pretty much took the past six months and stayed at home.  A luxury, to be sure, but also one that has it's downside in that you have a lot of time to think about things.  For me that's not always the best thing.

Renee--I'm sorry to read about your skin going through the hell.  When did it start in terms of how far you along you were with your rads?

Also, Rachel, since you so recently finished, I'm curious as to what the follow up to se's are for you.  Have you noticed anything that coincides with the radiation effects continuing 7-10 days afterwards?  Actually that question goes out to everyone who has finshed their rads.  I'm looking at my side effects as being the result of the tx I had done 5 days ago.  While I am going to have the last of my general tx's this Friday, the redness that I have now is from tx last week.  Does that make sense.  And while my rad onc tells me that I'm reacting really well to tx, I'm thinking...well talk to me a week from now and we'll review how "well" my skin has held up.  Hope for the best, but be prepared for the worst.

Catherine

Oh yeah, absolutely.  The whole time she was like, OK,  you can go now, I can do this on my own... you don't have to wait... and I kinda had to stick my foot in the door so to speak, with the stroller and all... but it was so awesome, at the end of the day she was so happy I had stayed and thanked me so much I was surprised.  I did the right thing.

It was a wild day in a lot of ways, being there when they have no authority over me is fun fun fun.  And it was her doctor day, so she dutifully reported to the doctors and i with her, with the kid in the stroller and all waiting there for a while and the nurses flirting with my kind when finally one nurse comes up and says "Oh you aren't seeing the doctor today, she's not here, she's at a conference.   You can see her Friday".  My friend stuck up for herself but of course to no avail.  I was thinking every time they slighted me like that, how demeaning it is.

So she was saying as we were making plans for me to come back and help her over the next weeks and months, something about do I mind being back there and I said it gave me a chance to take back some of my own from the staff there, some who are correctly frightened when they see me ::::: and she smiled big and said "You are evil.  I love it."

Yep I had heard abotu the people who insist and show up.  I am glad I had a chance to do it and rarely felt better about any other way I spent a day.

----Just a quickie 'cause i am fading... yes.  After it's done one day I feel GREAT and the next REALLY TIRED and the next I can't move, then I wake up GREAT.. just cant tell in advance.  A bit annoying.  And there's the insomnia/feelings of dread. Once i recognized it and had a xanax one or two nights, it passed. I tried to kind of post as it happened.  Last boost was Friday and I am feeling very normal, today first day I didn't bacitracin and petroleum bandage the whole boob, just bacitracin on the boost burn and a gauze pad over it, and a cotton swatch over boob before bra.   But your tiredness makes perfect sense.  And the fuzzy headed ness.  Exact same for me at the time you are now.

Martha, I asked my friend today about your health insurance thingie and I wasn't quite sure what to ask.  If you have no health ins in the US she said you use what you have until it runs out and go on Medicaid.

also today we met with a legal counselor who gave her tips on how to deal with benefits/unemployment/disability stuff.  When I get some energy I can post their web site.  

Lemme know here or PM or facebook what you woant me to ask her?   

Wouldn't you know it, but yesterday I mentioned about this aloe spray oil that I had ordered but hadn't come in about 2 1/2 weeks.  Well, as I'm going out to do rads...there it was sitting outside my gate.  So, I bitched for nothing.  I hate when that happens.

Rachel--good to hear that you've recovered, and so quickly too.  You seemed to have really gone through some of the most severe se's, so it's great to know that the skin heals quickly.  And I'm sorry, but just the sound of the word metastasis, whether it's in a good context or not...don't want to hear it right now.

 Also, I was researching the drug I am on for heat flashes, and it turns out that it's also used as a treatment for breast cancer as well.  That sort of freaked me out a bit because most of the info I found related to that rather than as a treatment for heat flashes.  Made me think:  "What aren't they telling me...?"  But when I started to find info that applied, I felt better.  Funny how your mind can just "go there."

Today as I was going to rads, I got halfway to my car before I realized that I hadn't donned my little cap.  I sat for a second and then thought:  "Screw it!  It's hot out, and who's gonna care?"  It felt good.

Catherine

Hey Renee...after I went through menopause I noticed that my vagina was "dry"..seems it is from a lack of estrogen.  Now having gone through chemo which sucks the mositure right out of you, this problem seems worse.  Just friggin' lovely.

I use a product called Replens (does not contain estrogen), that along with lube does help.  Check out this link to the Mayo Clinic re vaginal atrophy.

http://www.mayoclinic.com/health/vaginal-atrophy/DS00770

Carol

Hi guys,

Yeah, I was on Medicaid the whole time, as all Mass residents are required to have health insurance. Being a single mom, self-emplyed, etc. I qualified.  The coverage was incredible. They covered every penny, including transport, as I'm 50 miles from Mass General. They paid for the wig, and rads at my local hospital (with a Mass General team), all prescriptions.  I am also covered for the three root canals I needed by the time I was done with chemo. Normallly they only cover root canals for the front 6 teeth (?????), but since I was in cancer treatment, they're covered, along with the crowns (comprimised immune system). And this is after tx is done!.  Also covered were six therapeutic massages, 8 pilates classes, the Qigong drop-in classes at the BC center, meditation sessions, all of which are a part of the Hopes program, a foundation funded by donations, which is support for cancer patients and their families and friends before, during and after treatment.  Truly amazing, I will always be so grateful I was able to be treated there and that this aftercare stuff is available. Cause you know what? We need it. I know I did.

Lots of people with private insurance have not had such complete coverage, so I feel fortunate. Although I cringe when I think that I cost the state probably close to a million dollars this past year. It's mind boggling.  Even though I worked hard all my life and paid into the system.

By the way, thanks to all of you for your acknowlegment of my finishing rads. I really didn't want to make anyone feel guilty, I just wanted someone to celebrate with, and of course, you all were there for me. You are amazing!   

Hello to all. I missed a couple of days. Wednesday, my students went to Special Olympics( I was outside all day) When I got home I used my nebulizer for my asthma and forgot to mix the solution. Needless to say I fell asleep at 7pm and did not get up until the next morning. Thursday I was still wheezing and not feeling good, so I went to bed at 5:30pm. Today I have been using my inhaler every 4 hours and I feel better. I know this does not pertain to this site and I am sorry for complaining. Glad to hear everyone is doing good.

With the Effexor XR 75 mg most all of my bad SE's have disappeared. I still sometimes get brain fog, but that is not too bad. This morning I found out that my ins will pay for the BRAC gene test. I am so happy. If it is positive I will have my ovaries removed. Still thinking about the options.

Have a good weekend and enjoy the lovely weather.

Rachel, you mentioned Facebook, look me up Mary Krayeski.

Hey Carol- What day of your cycle did you start the Tamoxifen?

Thank you Mary, me too!

So... I just got off the elliptical trainer, I did my old usual one hour with my kid strapped to my back. Gosh it feels good!

Cleaned the house better too.

I just wonder about this little tinge I feel in my upper arm underside.  Worry about lympedema...

And I sure hope the skin on my boob goes back to normal .... sometime soonish would be nice. 

Jeanne_D, I continued to get worse for about a week after treatment stopped, and I did continue to use the creams for about a month!!!!!  It's now about 5 weeks out, and the skin is all like new again.  Not even a flake left!!!  I am so glad that is over with!

Catherine, I think each of us finds this same thing happens when it comes our way.  We don't know it until it happens, and then the least little thing that we least expect throws us over the edge.  I was such a trooper throughout chemo when I was so sick with it and through my surgery and I thought compared to all that, radiation would be a walk in the park!  After all, it was the end of it all, wasn't it?????  When the burns started getting bad and the skin was coming off in hunks, etc., all I had to hear was tht my radiology oncologist was not in that day and I went over the edge!!!  I don't know why, I didn't like him anyways.  But I sure did want him to see what he did to me. 

I've also found out that I worry about my dog, Buster.  He is so bad, so hyper for a lab, and drives me nuts.  But right now, I feel like I couldn't live without him.  He's always right there, sleeps with me, etc.  I told my sister, if I were terminal and facing my last days, Buster better be there with me!  I think it took her back that I didn't mention anyone else --- just Buster!!!!!

My skin faired well during rads, just a little pink. However my husband asked if my skin and left breast would always be droopy. It was a little upsetting. I really feel for anyone who has had a mastectomy, or who is single. I really do not think he was put off by it, or said it to upset me, but it just sort of upset me. Oh Well, I am pleased with how everything is healing, so he can go ____ him self.