March 2009 Rads Group?

jessee54

Sama - I'lll check out that web site, thanks. Hope I can find the spray..

So I have my last tx/boost on Monday. I'll see the rad onc, then again in one month. She said by the time I see her tomorrow, I should already see a difference in the broken down areas. Well, she's right, it's peeling like crazy, black pieces of dead skin, gross!  One the right (Martha, sounds like our tumor was about in the same spot, also trip neg), the skin was a little raw as it peeled, and there was a little bleeding, which I hadn't heard anyone mention. The nurse said it was okay, no sign of infection, just keep it moisturized. It's kinda sore, but everywhere else feels better.

 Rachel, your letter was touching. I know all of us moms can relate, and remember those moments of first separation from our babies.  I guess it shows your instincts are intact! I miss those baby days....teenage years bring a whole new set of challenges, rewards, and heartbreak. Many of you have listened to me whine and moan about my 17 yr old throughout my treatment.  It's getting better, and thanks again for all your listening support. It kept me going.

So, after Monday, I'm all done tx; I mean done, like you Martha, no hormones for me. Just waiting to finish healing, and not worry too much about what the future will bring, and not mourn the past 9 months too much.  The emotional healing, the hardest part, still being affected by those lowest of low moments during the whole experience...the times when I felt helpless, abandoned, scared, alone... you all know what I'm talking about, and no one else does.

There was a woman in the waiting rm yesterday, I've talked with her several times as we have rad tx right after each other. She was sitting apart from her husband, who is always there with her. She said they need a vacation from each other, that he was being so unsupportive. I mentioned how this experience can really change people and relationships, and how my SO bailed on me halfway thru treatment, which I am still trying to get past. She asked for my phone number, saying how good it would be just to talk to someone who's been through cancer treatment (she has bladder cancer). I'll probably call her if I don't hear from her, cause I DO know what it's like.

The fact that her husband is there with her for every tx says something to me. And men like to fix things, and men can't fix cancer, and the one thing we need most which is to be held and comforted and told it's going to be okay, men seem to have a limited capacity for. They don't understand that DOES fix things, at least temporarily...

It seems that those of you who have had women caretakers and supporters have seen how going thru this can even change those relationships. Isn't it strange? I guess the good thing is that it has shown me how important it is to be compassionate, at a deeper level than I have ever known. Does that make sense?  If I take nothing more from this whole experience, it will be worth it, to have learned that. 

Thanks for being here, all of you, and sharing yourselves.

Love and hugs,

Jessee 

Rachel_BC

Jessee, I think there is a commonality on a lot of levels that you rightly said can only  be shared here.

and nelia brings up another issue, after dropping out of the "normal" life, even my shorter dropout, there's the same thing.  Reminds me of when I left town for 6 months.  I came back and my friends had moved on, well many of them.  And then there is a line in my fave cancer book I keep quoting, about how certain people sort of fall off your radar for a while and if you are lucky they wont come back.

I confess I start to worry since most folks started before me on this thread, they'll move on and I will be finishing alone.  That is, until I saw that Sama and I are on the same sched- woohoo!

At the moment I am more worried about losing you gals than I am about losing touch with people who have moved on.

Interesting perspective from the triple negs. I am unthrilled to have to continue treatment, worried about tamoxifen- but I did a lot of research and really, my fears should be as unfounded as they were about RADS.

nelia48

Rachel, I won't leave!!!!!  Even though I'm finished, this is one experience that isn't over when it's over!  I finished on the 15th, and still suffering.  I can't get over the tiredness, etc.  I decided I would stay in this March group until the last person on the train is done and all that can be said is spoken.  I'm sure a lot of the gals feel the same way.  So don't feel you will be alone in this.  And I'm sure all the gals you got to know on this thread will be somewhere on the board posting.  I know I'm all over the place reading and posting. 

jessee54

No, I'm not leaving yet either. I hope I didn't appear to be leaving.  Just some thoughts I was having in response to others who have mixed feelings about being done, that's all.

Nelia, you hang in there. You are such a fighter. I'm not surprised you are still so tired. Your body has a LOT of healing to do, and all it's energy is devoted to getting you better. I'm so sorry you are still suffering, that sucks.  <<<<<<extra hugs>>>>>>>>. 

Rachel, we won't leave you hangin'. You've shared so much of yourself with us!  Where we would all have been without each other's support?? 

Rachel_BC

wow. I totally didn't mean to say that anyone had to stick around... if you can get away- FLY!  On the other hand, wow, this is what I mean about the difference between the people here and - well not here.  Who else would stick it out to help someone else?  Then again, here's these mommies coming out to help me with my son.  That's some wild stuff.  The kind of thing I would do for other people, but I didn't know until now there would be people who would do the same for me.  Oooooookkkkkkaaaaayyy, enough soap box and there will never be enough thanks, but thank you anyway

 Fatigue is gettin me.  Boob is red, I see some little brown spots I don't think were there before. Slather slather slather and bless those piece of cut up t-shirts.  I sort of papier-machier myself.   Got a little irritation in my cleavage, but its like what I had before radiation.  Calendula wasn't helping so I put on a little cortisone, even though they'd probably prefer I didn't.  I also wonder if I did something wrong by having a couple glasses of wine and getting a little drunk on Friday.  I rarely drink.  But like once or twice a year, yeah!  It was a fun night.  But neither place I have been for radiation has a list of dos and donts, and I haven't got a good memory these days.

For me it's really about skin-on-skin spots.  I know they are not radiating my under-boob, but that's red, I figure from the reflected heat of the boob lying on top of it.  Just trying really hard to keep the skin together. 

I was not such a great mom these days, so tired and all but I think the more important thing is we were together. 

Those who loathe drinking water, know that I am sitting here with half a bottle trying to figure out how to drink the rest of it. Diet means I can't eat stuff that would make me thirsty.  It aint always easy.  I'll figure out something, even if I have to eat saltines.

Hugs gals, and many thanks 

Anonymous

Hey Gang...three boosts left...Wed is my last one...thank heaven!  The skin under my arm is feeling worse than it did last week so I am going to check with the rad onc to see if there is anything else I can do cream wise.  Must admit going topless off and on this past weekend felt great...although I am guessing that work would not appreciate the look...LOL.  I am lucky in that if need be I can work from home..so I will see how things shake out this week. 

The fatigue seems to come and go.  I wake up and feel just fine, then a few hours later the fatigue hits.  Now that the weather has improved and about friggin' time, I plan to go out for walks at lunch because that might just help with my energy levels. 

Rachel, keep in mind I do not have any kids and I think having young children while dealing with BC does not help in the fatigue department.  One of the hardest things - I think - is asking/letting others help you during this time.  That was the absolute hardest thing during this entire journey for me, harder than the side effects even, was to allow people to "do" for me.  I think it comes from being the oldest of four sibs.  So one thing I am trying to learn is to "get off the merry go round" and just sit back and chill out and let others help.

So how's this for just plain - can't they get their "you know what together"...last week the radiation tech tells me to plan that the full breast radiation continues to work for about 2 wks after the last treatment, the rad onc nurse tells me one week after the last treatment and the rad onc tells me three weeks and then a different rad tech tells me 2 wks.  So I am choosing 2 wks which means that everything should start to settle down by May 6. 

While my ride on the March Rad train is pulling into its final stop, I will continue to check in and see how the rest of the passengers are doing. 

Stay cool everyone.

nelia48

Just came back from my visit with my Primary Care Physician.  Must say, she is better than anyone I see anywhere.  Takes forever with me, listens, etc.  When I said the words, "chest pain," they immediately did an EKG.  No problems there.  She asked a million questions about the pains I'm having.  They are stabbing, front to back, just left of the center of my chest.  She concluded that I may be having esophogus or stomach problems, due to the chemo and radiation.  These both kill fast growing cells, which includes the lining of the stomach, etc.  Since I get the pains later in the day, like afternoon, and evening, it makes sense.  So she wrote me a prescription for Prilocec to see if that helps.  It did relieve me that it was not my heart.  Being that my bc is on the left side, all I could think of was heart.  So don't panic with the stabbing pains!

My burns are healing up very quickly.  I can see a difference every day.  Am I ever glad about that.

But I am just so tired!!!!!  I can hardly grocery shop, no less carry it all in and get it put away!

TorchSong

Hello all--

Four more boosts to go... 

The rad tech raised her brow when she looked at my breast today. I said, "Actually, it's getting better." She just looked at me. "If you say so..." 

Well, some of it is... Actually, it really does sting. Not really hurt, as in stabbing pain, just itchy stinging. That on top of the last of neuropathy in my fingers and toes is going to drive me crazy. It doesn't really hurt, it's just very uncomfortable and annoying. However, the neuropathy is decreasing a little every day. Nails are lifting, too--I've lost three, but it looks like that's all I'll lose. Yay! The rest still look scroungy, though.Eyebrows are growing back, eyelashes and elsewhere (other than head)--not so much.

Hey Purple--Don't you love how everyone has a different timetable for you? Three weeks, two weeks, a month... I read on another thread (I think it was another thread...chemo brain strikes again) that it takes a month to recover for every chemo treatment. In my case, that's six months, plus the rads. Erk, must be close to a year, which means almost Christmas! I sure hope I'm fully functional before that.

Fatigue is getting to me, too. I thought it was just because of the early hours, but I got a decent night's sleep last night and I have no energy today. Managed to get to rads, do laundry and pack one box of china (I've decided to use by "good stuff" since I like it--why pack it away in the attic? The other stuff is going in storage as back-up)  That and some websurfing, but not much that's productive.

Rachel, I don't know how you're doing it with a toddler--I remember those days (my son is now 20!) and I can't imagine keeping up with him, the way I feel now. You do what you need to do to get through--well I know you will, you're pretty tough.

Hugs to all!

Martha

Rachel_BC

Heck yeah Martha, I'm tough.  I am a New Yorker, right?  Augh.  Well, I have a theory about any project: It always looks the worst when you are 1/4 of the way.  Because at 1/4 the way it's obvious the trip ahead is a lot more then going back where you started.  By the time you get to 1/2 the way, you might as well go forward as back, and it all gets easier from there.  So I am really happy since I passed the 1/2 way mark.  Then when they did some re-figuring to let my last day be May 8 instead of May 11- so it was before Mom's day and I wouldn't have to come back after the weekend, and yee haa, yeah that was good too.

Boy am I glad I had those spurts of energy the last couple weeks.  I switched my summer clothes for my winter, so today when it went to 90 (for Canadians that's HOT btw) and I was sooo tired I was sooo happy my sandals and wrap pants and hat were handy.   Yesss.   

I did not do chemo, but I definitely have some kind of fuzz brain thing happening, due to stress or fatigue... kind of like being punch drunk.  I was definitely a child of the 60s and lemme tell ya, it was good training for this. 

Even though I am really being a crap-o mom these days... I am using the Sesame Street re-runs as a babysitter a LOT, sometimes I am just lying under a blanket in his room while he plays, he's so amazingly good kid... and the nanny got sick on Saturday so it was a bit of a surprise to be just us two and I was beat beat beat...i think I slept through him crying and two alarms until like 11am, or did he really sleep that long?  Can't remember... anyway... so the nanny comes and she's so wonderful you'd think he'd be so happy to see her and get rid of ol' sleepy mommy, right?  Nope.  He still wanted to be with me.  Yaaaaaaaaaay! 

He is beginning to catch on to me leaving... I made it a point always to NOT make a big deal of when I would leave the house (besides I could never stand to see him say "Goodbye Mommy") - now this is before breast cancer or anything.  I just would slip out and do whatever and slip back in, relying on his lack of a sense of time passing, and being distracted by someone else.  But... he's beginning to notice Mommy isn't there... so it's a really really really good thing that I can bring him with me thanks to these mommy volunteers.  And all the people I see a RADS ask for him, it makes my day.  An aside, where i go there's radiation for various cancers.  Gives me a heckova perspective on my breast cancer.

So even though it's not chemo brain, I am still pretty weird (yes, weirder than usual) and with the pals I made at RADS it's sometimes really funny, the kind of conversation only two people with the same kind of fuzz- brain could understand.

Oh and I wrote to Sharpie and asked them about the pens because we use them, no answer yet, I should call them tomorrow, but you know how that is... chances of me remembering that errand tomorrow are as good as uh... what was I just saying?

Purple (Carol? I'm too lazy to check..)thank you for perspective.  Still, if you can work, and I am presently not working, and if my kid is going to keep cutting me slack, well i am just going to try like hell to keep doing Weds and Thus myself- and I walk the mile each way each day and take the staircase up and down to the basement, and I walk extra whenever possible, like today probably 4 miles, I walked to the river and back.  So maybe... maybe... I can just make it.  But on the other hand, I am canceling stuff like Mother's Day with the family 2 hours from here.  I kept telling them I could only make it if it was in town, I can't drive like this.  Part of my whole writing career is writing about cars and driving, and driving tired is a bad, bad thing.  With my baby?  No.  Uh uh.

nelia, I am breathing easier just hearing you say "My burns are healing up very quickly".  That's a mercy you deserve.

I'm also reaaaaallly reallly happy because another project that is important to me just came to fruition today.  It's a whole long story about the home I own, there was a fire in 2003, no one's fault, no one got hurt, but the building is a condo and the board took over the reconstruction and I still can't go home so I am suing them- that's the briefest way to put it.  But putting together the lawsuit and the motion has been a long tedious project, and of course made that much harder with the diagnosis.  Turns out the radiation center is ONE block from my lawyer's office.  Nice for me.  So today we finished the motion, I have nothing more to do for the case, I did a very good job.  

So the kid's OK, so far the boob's OK (boy is my nipple sore, oy!), taxes are filed, the lawsuit is filed, my summer clothes are out, I have less than 2 weeks of RADS left and I hope to sleep for weeks until the fatigue is gone.  That's the plan.

 

(Oh and trying to avoid the swine flu ) 

nelia48

Hi, Martha! Glad to see you posting!  And glad that you are not burning too badly!  The tired thing is a pain, and I feel so lazy. .. .still!!!!  I saw my primary care dr. yesterday, and she thought this was all very normal.  She checked out my burns and told me I should have come to HER as she would have helped me through it.  Darn!!!!!  Never thought to call her for help.  I REALLY like this dr!!!!!  She did say it is healing nicely and to keep using the creams!!!!!

I mentioned the stabbing pains in my chest, and she concluded (after 10 million questions!) that my stomach and esophagus are probably irritated.  Since these are also fast growing cells, they have taken a beating with chemo and radiation, too.  Never thought of that.  So she prescribed a stronger Prilocec than just the over the counter. 

I'll be glad to hear when the last one on our train is done with all this.  Radiation was really hard!!!!!

jessee54

I'm DONE!  Unbelievable!  Yesterday was my last boost, I got and gave some big hugs, and I feel a new surge of energy just knowing that it's finished. You all have that to look forward to.

The rad onc took one look at my skin and said "Oh, you poor thing..." and then said, "okay, let's be positive."  The skin underneath where I peeled looks nice and healthy. I have a raw spot about 3" long by about 1" wide near my boost area, on the side of my breast, so she wants to see me back in a week. She said that would get worse before it gets better, but I don't believe her, cause it's already much better than it was a week ago. Just stings a little, but I'm continuing with the silverdeen (or whatever it's called), which she claims will make it heal faster.

It's amazing how quickly this is all healing up, although they said I'd have my "tan" for up to a year, or in rare cases, permanently.

Rachel, you are hangin' in there so well. It's seems like you've been accomplishing a lot even while having to go through this. Babies bring so much joy, and I know that's what's getting you through this.  

I'll be very interested to hear how Sharpie responds, if they do. Thanks for contacting them. If enough people did that kind of thing, maybe we could rid ourselves of so many toxins that who knows what it's doing to us.  Too many new cancer cases!

BTW, I've been told that the brown spots on the boobs are the hyperpigmentation of the hair follicles. Hmmph, who knew there was hair on our boobs?! 

Martha, hang in there, your energy will be back soon!  I even got my sense of smell back finally. I didn't realize how much that was affected until I started being able to smell things again!  I know the taxol is still hanging around and affecting me somewhat, like you said, nails still grungy, etc.

Here's to a continued beautiful spring.....Judy 

Jeanne_D

Hey..I only have 7 more boosts to go and then I am done.  I cannot wait!  I am so sick of this...37 total treatments.  I am getting red bumps that itch on my breast now and it is driving me nuts.  I had them on other spots before, but, not as bad.  Has anyone else had these bumps?  And, what are they and will they go away? 

Anonymous

Rachel...keep up the good fight.  Treatments, along with what is going on in our lives certainly affects each and everyone of us differently.  You are doing amazingly well with everything that you have on your plate.

Martha..oooh don't like the sound of one month for each chemo...man oh man.  Glad to hear that the burns are healing.  My nails look disgusting as well...so far...fingers crossed...none have fallen out completely.  Two broke off really low but since the part that broke off was not attached anymore to the nail bed it didn't hurt.  I am keeping my finger nails really, really short and trying to be very careful with them.

Nelia48 - I would never have thought to talk to my primary onc about any radiation issues.  Don't you wish they would tell you these things from the get go.  Must be a relief to find out you do not have a problem with your heart because of the treatment.  Hopefully the Prilocec will work and the pains will subside.  From everything I have researched, it is going to take time for the fatigue to buy a one way ticket outta here...so take care of yourself.

When the rad onc nurse looked at my burns she told me they were not that bad at all.  Well...they may look ok to her ...I think they look awful..and they certainly are uncomfortable but they do seem to be healing somewhat.  So I guess I will suck it up and just keep on keeping on.  My fatigue seems to come and go.  Some days I feel pretty wiped out and other days I feel like I have a lot of energy. 

My hair is starting to grow back on my head and since the weather is warmer I have given up wearing the head covers.  No eyebrow growth yet but since I lost those last I suspect they will be the last to grow in.

Only two more boosts to go..today and Wed and I couldn't be happier.  Just so tired of this whole radiation thing.

Stay strong all.

PurpleMe (aka Carol)

sama710

Rachel et al. -

I wrote to Sharpie (Sanford Corp.) and called them.  They responded that Sharpies are NOT approved for use on human skin, and they recommend that you not use them on skin.  Several contain industrial solvents.  In fact, here in Boulder where there are a lot of climbers, the word is that you should not mark your climbing ropes with Sharpies because they will eat away at the material.  So... I would recommend that you not allow them to be used on your skin.  I brought this to the attention of my radiation oncologist,and she said that U.S. Oncology is no longer allowing the techs to mark skin with Sharpies.   They have treatment centers throughout the country.  

Amazing to me that they have been used so extensively!  I feel better having one less toxin on/in me.  Because my radiation treatment is near my surgeon's office, I just went over there and they gave me a surgical pen, which is approved for human skin by the FDA.   

bluedasher

Jeanne, I had red itchy bumps. My rads nurse said that they are an allergic reaction to rads and that I could use hydrocortisone cream on them. That cleared them up pretty quickly. They stopped itching in a couple of days though it took longer for the rash to totally disappear.

eadsla

Hello everyone!  Just caught up with a lot of postings...  Been a little tired lately, so I'll be brief.

Rachel...wow...I wanted to kick that thing of a person that gave you such a hassle.  For so many reasons and on so many levels...just wrong.  I was heartened to see that the situation was resolved, in no small part, due to your own dignity in how you handled everything.   As for your letter?  Stunning.  If nothing else, you've shown that breast cancer may disrupt our lives, but it never had the power to change who we are or the inner strength we all possess.  While you may wonder what your child will feel during this bonding period of his life, I am certain the one thing he will feel is your strength and your love.  That goes to all of your who have little ones to care for.

 Wow, a lot of you are in the homestretch or have finished.  I'm pumping my fists in the air for all of you.  I don't even have the requisite synapses after chemo to process what must be going on in your heads: excitement, relief, confusion...but hopefully a sense of peace in any form.  Every once in awhile, the thought hits me:  "This is cancer.  This is me, doing cancer..."  It's weird, but it's just a neutral statement.

 Thanks again to everyone who posted about their creams and lotions.  I've just finished 15 of 33, so hearing from all of you about what has worked for you has been a real help.

Catherine 

bluedasher

I'm done - both in the sense of having no more appointments and in the sense of being fully cooked. Mostly I've avoided radiation fatigue but the past couple of nights the minor burn under my arm has been interfering with my sleep so now I'm tired.  I've tried burn spray with benzocaine and  emla cream which has lidocaine and prilocaine. Neither helped much. Sleeping with a pillow under my arm to keep pressure off the burn on my side helps until I shift around and the pillow drops out. 

Purple, my rads nurse told me that radiation damage usually peaks 7 to 10 days after the radiation ends. My burn is well away from the boost area so she said the count started when my whole breast rads stopped and it is now day 7. I think the pain peaked a couple of days ago and its been feeling a little bit better. Now it only hurts when pressed on. There is probably a lot of individual variation and then one person may be talking about when the damage peaks while another is talking about when most of the sided effects have subsided. 

It also has to make a difference how much was radiated. For me it was just my breast and a bit of my side to make sure they got all the breast tissue. I haven't noticed any effects on my insides like lungs or chest pains - the radiation I got didn't get that close to my core. With positive nodes they are likely to radiate more of the chest area which is harder on the body.

Martha, I've heard some of the pessimistic recovery times too like one month per month of treatment. Maybe for some people it takes that long but I don't buy that it dose for everyone. I started rads about 5 weeks after my last chemo and I was feeling much better by then - almost normal. The tingling and numbness in my finger tips took a few more weeks to go away. I feel that I'm over the effects of chemo. I hope my blood test results this weekend show that the anemia is gone. 

Rachel_BC

Gosh I love you gals.  OK so today I am so frikin tired its nuts, I thought about giving up on taking my son on Weds and Thurs but- the fatigue is so weird.  Like, I am tired, OK I sleep, I feel better but still tired... meanwhile if I HAVE to do something, I can.  So I figure I will  keep pushing with the kid.  

I also got the itty bitty red bumps, nurse says its definitely the radiation thing.  I got 'em under boob to the right- near my center.  That area is actually not being radiated, but its just having this big ol' hot radiated boob lying on it that is cooking it up.  For treatment she suggests to wait until and unless the little bumps open, (that's a nice way of putting it) and then go for these big bandages of antibiotic stuff.  Problem is, the big antibiotic bandages have a tendency to stick, and my skin may come off with it.  Fun- not. Actually the cotton t shirt strips and calendula cream are pretty good- the cream is absorbed and the cotton makes a terrific barrier between skin and skin, because the cotton weave leaves air pockets, and air is a great insulator (while the antibiotic bandage would not have that quality). I think that I just missed that area with all my slathering and cotton layering.  

I asked about the aloe, having found the Vitamin E in it and she reassured me that I could use it, the issue was about taking Vitamin E orally. (Yeah, now she tells me).  And I wasn't supposed to drink alcohol- I just forgot.  I so rarely drink (last time was last year at the opening of HAIR in Central Park, not counting champagne ice cream and brandy chocolates at New Years) I just totally forgot.  So I am trying to keep the skin together with the calendula cream, the cotton t shirt swaths and that nice cold organic pure (well not so pure as it turns out) aloe that I keep in the fridge.  I think the heat wave didn't help either.

Sama- Now they all kinda looked at me like I was crazy (again) when I started in about the Sharpies, and I this letter from Sharpie which I printed out and- forgot to bring with me:

"We can't approve the use of a marker or a pen on ones skin.   Our markers and pens are writing instruments and have been tested and developed for normal writing conditions.  Non-toxic is defined as the following:  identifies that products have been reviewed in a program of toxicological evaluation by a medical expert to contain no materials in sufficient quantities to be toxic or injurious to humans or cause acute or chronic health problems.  

For a product to be used on the skin, it must be FDA approved.  None of the writing instruments in the Sanford line are FDA approved.  We recommend purchasing a face paint that has the FDA's approval."  

At least I remembered the part about the FDA and what you said about the surgeon giving you a marker, so I asked for a surgical marking pen and even though they all thought I was going overboard, we all agreed it couldn't hurt.  They gave me a surgical pen of some sort, its in a sealed packet to keep it sterile.  So I am saving it for next week because they said they will be tracing the outline of the tumor bed plus margins on me, and putting those permaderm stickers over the tracing to keep it in place for the whole week and I am supposed to not let it wash off... so that would be the time I would most want the safest ink.  Meantime, if they have to mark me a little because my tattoos are fluorescent and can't be seen without a UV light, so they re-mark it with the non-toxic Sharpies, fine.  It's only 3 more days WOOFRIKINHOO before next week, and boosts.

Face paint?  That's an interesting concept.  Hey if you can get a copy of the notice from US Hospitals I am sure the folks here would be interested to see it.  We're so cutting edge in NYC... it'd be kinda fun to show them that CO got ahead of us... 

nelia- yeah that's so typical... they don't tell you until it's too late to help you coulda gone to the GP.  Sheesh.   

jesse- seriously... you never had one of those ugly hairs turn up on your boob?  they are like the strays that pop up on the chin... (don't tell me that never happened to you, even if it hasn't) OK so I am jealous of you.  So does the hyperpigmentation mean that I wont get hairs there any more?  That'd be a nice perk. Although, I'd take the hairs over the spots, I'd rather think the spots were leaving.

jeanneD- yep, I think those are the ones most of us get, now I got 'em.  They oh so DO make me want to itch.  But.. then the idea of what would happen next makes me run for the aloe in the fridge, or cream instead.  

Carol- you are too kind considering my plate, I'm feel like a whiner next to my RADS pals who did chemo, or that gal who was pregnant and doing chemo and then RADS with a newborn.

bluedasher- I wish I could use the cortisone.  I didn't ask directly, but that's what I always use on my usual irritations.  Maybe I should ask directly.  I just sent an email to the nurse.

Catherine, thank you.  Oh I wore myself out on that "thing of a person", but it was worth it.   I can practically see that girl in the gorilla suit.  Grrr.    Meanwhile... I gotta tell ya, I learned early on that all writers are insecure, and it's been so long since I sold an article, or even wrote an article for sale, and I am so far inside this issue I can't see what I write about it critically, that to have such a positive response is heartening and validating on so many levels for me as a person, a writer, a mother, a breast cancer patient.  Thank you.  Today was the day I see my doctor, and she's really incredible, and she asked if it was OK to send or show to people.  If I wrote something that in any way helps anyone, that's helping me heal in the best way.  I am only sorry it's not funnier, because I usually write funny stuff.  Like what you said "This is me, doing cancer."  Funny!  

Agreed on the part about cancer not changing us.  For people who needed change, needed to appreciate life more, then maybe cancer does force them to make the change they needed anyway, but for people who already love and appreciate their lives, cancer just makes us more ourselves.  I was thinking today, I didn't leave who I am in the dressing room when I put on the gown.  

Even though I have the little red bumps, I give the calendula cream and lotion and the strips (wider better) from my tissue-thin white cotton t shirts, plus the aloe  top marks.  

 Your sig asks if it's soup yet.... well I don't know if it's soup... maybe more like barbecue.. 

 

Rachel_BC

oh and for bluedasher- just posted:

* I've tried burn spray with benzocaine and  emla cream which has lidocaine and prilocaine. Neither helped much.-- I have used emla cream for a bunch of things, it only works if you can put enough on, and keep it on with like saran wrap, and after an hour or so your skin is numb, but it only stays numb for like 20 minutes or so.  It makes sense that that wont help.  For instance, I used it on my wrists and inner elbows before surgery, I didn't know where they were going to put the IV.  When surgery happened, I could hear them fussing with the IV trying to find a vein or whatever in my wrist, but I couldn't feel it  *Sleeping with a pillow under my arm to keep pressure off the burn on my side helps until I shift around and the pillow drops out. -This makes sense to me too.  *my rads nurse told me that radiation damage usually peaks 7 to 10 days after the radiation ends. -mine said the same * My burn is well away from the boost area so she said the count started when my whole breast rads stopped and it is now day 7.- That sounds good to me too- the electron boosts I am getting are more superficial than the proton whole boob radiation.  So that sounds really hopeful and possible, at least as far as the fatigue.   Still, my nurse said it would get worse after RADS ended, for a couple weeks and possibly a month.  * There is probably a lot of individual variation and then one person may be talking about when the damage peaks while another is talking about when most of the sided effects have subsided. It also has to make a difference how much was radiated. - I agree on that, for what it's worth.  My big droopy boobs came in handy for this, my boob is practically in another room from my body during RADS.  Still, where I have the skin problems is on skin I am assured is NOT being radiated or in the path of the beam.  Its skin that touches the skin that was radiated- despite my slatherosity.   

Jeanne_D

Thank you bluedasher.  When did the rash or red bumps go away?  Soon after the radiation treatments were done?  I am hoping!

BooBee

Do I smell BBQ boobs?  That must be mine. 

Hey ladies.  I'm doing more lurking that posting right now but I'm thinking about all of you.  We have a couple of campus rentals that we have to get filled for the next school year.  Very time comsuming.

(((((((((((Big hugs)))))))))))))

Rachel_BC

argh, nearly 4am and I am woken from deep sleep with the burning.  it's on too many sides of my boob to find a comfortable spot.

but a curious thing when I came to post, the AC is still on in the living room with the computer, but I had turned it off in my room in anticipation of the weather temp dropping today so it's colder in here, and maybe that's cooling my boob which now resembles a nuclear cooling tower on meltdown...

 just another Camp Nukemboobie BBQ... 

bluedasher

Jeanne, most of the redness went away in a couple of days, but I can still see bumps even though that area hasn't been radiated for a week. As long as it doesn't hurt or itch, I don't mind if the bumps take their time going away.

nelia48

Loved catching up on everyone's progress here!!!!  I'm just a happy camper here!!!  I can't believe how fast this is healing up.  I finished the last treatment on the 15th, and up until about the 25th, I was just in agony with the horrible burns.  Then, all of a sudden, it started healing up, and now, it's just about all healed.  Just a small patch, about 1 inch, is still a little scabbed over.  The rest is just lightly discolored.  I don't know if the fast healing is from the gallons of creams I used or what.  Something worked.  Also, I didn't realize how swollen I was until it all went down all of a sudden.  And the stabbing pains are gone, too.  The only thing left is some soreness in the ribs.  There IS light at the end of the tunnel, beliee me!  Now, if I can get over the tiredness, I'll be a happy camper!

TorchSong

Hi all!

The redness is already beginning to fade (last wide-area was a week ago). The open places are beginning to heal, but just beginning. For the rest, it's very dry-feeling and peeling. My back itches so badly! Pouring on the lotion!

You know I was thinking that in some ways, my life has been simplifed by this whole journey. When I lost my hair, I saved a bunch of time (no more washing, drying, styling, cutting, coloring), plus no shaving legs or waxing eyebrows; with the thrush, it was much easier to decide what to eat (because there were so few things I *could* eat), I mostly shlepped around in sweats and slippers; cut back at work; and now I'm not wearing bras, so not as much laundry....     OK just trying to think positively here.

My lymphedema is bothering me--has the last couple of days. My forearm feels very tight and the outside of my hand is sore. I get the compression sleeve tomorrow, so that should help. Of course, it's hard to tell with some of the discomfort--if it's the LE or the leftover neuropathy from the Taxotere...

Fatigue...it just really hit this week. I worked from home both yesterday and today...didn't go in at all last Tuesday.  I'm working at my other job (mostly because I am so far behind in hours it isn't funny), but what I really want to do is lie around on the couch and read or sleep.

Wow listen to me whine!

On the brighter side, I have only two more boosts to go! And the weather is trying to be springlike--I grilled last weekend. My ex had bought the grill for me last summer--we had practically lived on the porch--she would make dinner for me on the grill and have it waiting when I got home and we'd have dinner on the porch... This was the first time I'd used it since we split up--lots of memories. Around a grill--kind of silly, I guess--but still, I managed to grill some chicken and enjoy myself, without either breaking down in tears or blowing up the grill. I'm thinking about getting some salmon and trying that this weekend, if the weather is warm enough. I love grilled salmon.

I'm going out to dinner on Friday with friends to celebrate the end of treatment--the end, finis, done. I'm not even saying "except for follow-up" or "getting the port out" (which I have to wait another six weeks for, argh!), let alone the thought of recurrance. I am not admitting the possibility of that!    Not in denial, just not going to even think it might.

Hope the rest of you are doing OK!

Hugs

Martha

nelia48

Hey, Martha!  Glad to hear things are healing up a bit!  I know what you mean about the "simplified life" thing.  I wonder if I'll remember to comb my hair in a few months?????

 Funny that you mentioned your back itching!  Have you looked at it (or had someone look at it)?  I was complaining about my back itching, and someone told me that it was very brown on the side that I got the rads!  I can't imagine it went all the way through and out the other side.  No wonder they say your lungs and heart can be damaged with all this!

A celebration sounds like fun!  I think I'm doing the same, so I'll be thinking about you when I'm eating a great big fat juicy steak!  I just havent felt like going out until now.  Yes, I agree --- just keep telling yourself it is done forever!  No more! Ever!

eadsla

Okay, I have to laugh at Rachel's barbeque and Martha's grilling...and now KFC trying to nose in our action with their silly new grilled chicken (okay, I saw an ad for it while I was reading posts).  It's madness, I tell you...madness.

Rachel, I hear you and echo all your thoughts on the writer's angle.  I'm amazed that women can write about this experience, and am so thankful to be able to learn from them...but professionally?  Nope, too close to home at the moment.  It's also been awhile since I submitted anything to my agent(which would then get rejected anyway, so...), that I questioned if I was really all that passionate about the writing.  Then the bc came, and I decided that now is not the time to think about it either way.  It was almost like having bc got me off the hook for beating myself up about where I was professionally.  Early on, some idiot made a comment about how I should write a screenplay about all of this, and I thought to myself: "Sure!  Right after I finish the one about me punching you in the nuts..."

I'm also glad your doctor is passing your letter around.  It should be shared, and it will touch many women.  I'd like to think that one day from nowhere, some stranger will seek you out and let you know what an impact your words had on her.  I do believe those moments exist.

Martha...Oh I so want to give you a big hug after hearing of your memories of your grilling.  Truly...just wanted to grab your fuzzy head and give ya a big squeeze!  You make the most of your grill, especially now!  Make new memories!  Might I suggest grilling some asparagus or even, better, brussel sprouts.  Sprouts are amazing grilled...they get this nutty flavor and they're so good for you!

Radiation peaks 7-10 days after????  Excuse me a sec...(&%&^$^&$^%#%#%#^&&!!!)  Okay...love hearing that...  But you know, after what Nelia went through and she's seeing the healing so rapidly?  I'm not going to get freaked prematurely.

Sama, I called rebecca's herbs since you can't order directly fom their website, so I'm having some of the spray aloe oil shipped.  I know I'm going to have such a slew of aloe and calenula products when this is all over.  I've become a bit of a stockpiler when it comes to bc preventative things.  Half of the things I bought for chemo prep never saw the light of day...but I was prepared!

 Okay, and lastly for now:  Swine Flu?  Really...?  Can I just put out there  that I would just be laughing and pissed off I came down with freaking SWINE FLU after all of this.  How rich would that be?  But now I can't stop myself from watching all of the new coverage.  I'm a bit of disaster news junkie, I'll admit.  This year, with all the crises that have been going on, I've sort of felt cocooned from a lot of it, almost a spectator since I made the choice to just focus on getting better.  But there is something weirdly soothing about seeing that there are others who have it worse than yourself.  That sounds awful, but...you know what I mean?  It brings on a deeper sense of gratitude that I think I had intellectually, but never fully realized or truly appreciated. 

But still, if I got the Swine Flu...?  I'd have to kick something.  Probably end up breaking a toe.

Gonna rethink my "soup" signature...gots da' grillin' on my mind now.

Catherine

Rachel_BC

Catherine, oh my lord how you make me LAUGH! Yeah I thought about Martha's grilling and my indoor in-bed BBQing too... but Martha, I am so happy you are enjoying these things again.  And nelia, hearing you now is just amazing, and like Catherine I see how fast you are healing (as opposed to feeling worse) and think yeah, that could happen for me too

On my own issues, I have to admit I am really surprised.  They treat the idea of pain meds as if it was some combination of top secret mystery and a controlled substance.  I wrote the nurse practitioner last night/this morning but I know she's not into email.  Fine.  I called the nurse number this morning and a nurse told me they'd take care of it when I came in.  I called again while i was waiting for the mommy to come help us (she actually was already inside, these gals are amazing) just to make sure it would be quick so I could get outta there and so could the mommy, but still, when I got in there was nothing organized and the resident didn't know what to give me, some concern about giving me lidocaine cream (which I realized actually could be helpful in this circumstance... because you'd put it on a place that necessarily was skin to skin, so that would keep it on like the saran wrap, and the numbing could last for quite a while that way) then she couldn't find any lidocaine or Xylocaine whatever gel in the cancer center (?).   I asked what the issue was with using the gel and she wasn't sure but thought it could be bad if the blisters had opened... 

I just don't get it, they know we're going to get these things, why aren't pain remedies easily available?  I have a cabinet full of vicodin and other controlled substances, I am trying to do as I am told, so like... what the freak?  I got an email from my doctor at like 530pm saying she doesn't want me to use the lidocaine but not saying why.   not a word about the silver sulphadine stuff which I also got from the resident today.  the resident said something about ibuprofen and similar non-inflammatories being helpful, but  the doc didn't say a peep.  Just doesn't make sense.  The good news is that so far, it doesn't hurt so much.  The problem I think is that I put on the creams while standing up, but when i lie down, there's spots that move and are not creamed.  There's just two spots so far.  The armpit was a surprise and i remember someone here asked me why I was slathering up to my elbow... I mean I am a big slatherer... but this was actually towards my back inside my armpit (lovely lovely stuff eh?).  So I asked about it, was this somehow in the radiation beam or maybe my boob slides that far back when I lie down.  Again, big mystery, no one knows.  Radiation techs, resident, clueless.  I start to think about how close the back of my head is to my armpit sometimes... like... do they not know what they are radiating?

But then... ya know... I figure at some point I gotta just let go. One more week left.  Now another reason to not want a recurrence.  As nice as all these people are, I never want to see them again. What a mess.

More surprises.  Today they told me that tomorrow they'd do the set up for the boosts, and it would take more time.  Fine.  Then when they opened the door they said "Change in Plans, we're doing the set up now."  Well OK, but I wish I could have told the mommy of the day, who ended up sitting with my kid for close to 2 hours with all the flapping about the pain meds and looking for pain meds that weren't there and the surprise set up for the boosts when I told her I'd be back in 5 minutes....

And THANK YOU AGAIN for the news about the Sharpies.  Thanks to you they had the surgical pen to do the outline for the surprise set up today.  Boy did I feel better about them scribbling all over me and putting stickers over the ink and telling me it has to sit on my BBQ'd boob for over a week without cream on it.  

More clothing destroyed... first the bras got the underwire pulled, then the bras got all kinds of ink on them from various markings and remarkings, now both the bra and nice new white t shirt has purple surgical ink under the arm... fine fine fine... still better than sharpie ink.  I'll try to wear black shirts for the next week.

My oncologist gave me the choice of seeing him in a couple weeks or seeing him next week, and not having to see doctors "for a while".   Option 2 please.  So I am seeing him on the last day of radiation.  I see what you mean about this ending.  I want to hear that I am done AND that I dont have to worry about cancer coming back, but I will never hear that.  My next step is Tamoxifen for 5 years.  I am hoping of course to be one of those who LOSES weight on it and has an easy time.  Hey my last period was 10 days, so maybe Tamox will be a good thing.  But even so, 5 years of daily reminders.  Then again, there is what Martha was saying.  Sometimes it feels better thinking you are still doing something to fight a recurrence.  Well I hope to just throw the Tamox in with my daily vitamins not think about it.  A friend of mine who had another kind of cancer keeps telling me one day I will look back on this time and have pretty much forgotten about it, it being a thing of the past.  Wow.  

Now then Catherine, about you writing...  True enough, no use for pressure. But as I might have said before, I found out that writers are notoriously insecure.  There's several books of great writers who have been rejected, one is called Rotten Reviews and Rejections I think... when I first even considered writing professionally it was because of a message board about cars about 10 years ago when the web was young.  I was a very popular poster, my posts would draw about 10K hits.  The national car club noticed and essentially asked me to write an article for their magazine of 70K subscribers.  I was visiting some people from the message board when the husband turned to me and said "What makes you think anyone would want to read what you write?"

He had crystallized my exact fear.  Why would anyone really want to read what comes out of my brain?  Especially about cars, I am no expert, no specialized knowledge.  But by now I was friends with the president of the car club and I shared my fears about writing the article for their magazine. He was laughing, he was like, there are 10,000 people reading everything your write on a frikin message board, when are you going to get a clue?  People like to read what you write.

It sounds like someone got the same kind of negativity into your head about your writing (you think it would be rejected already?), and i am here to tell you, girl, you can write.  I love to read what you write.  You did chemo right?  You still gonna let someone else's negativity be in your head or your life?  If you don't want to write or submit to your agent, fine, OK, or maybe chuck the agent and submit for yourself, get another agent, write about this or something else, but please do or don't do it because of what YOU want to be doing- and no more beating yourself up about this or anything.  It sure has nothing to do with your talent, you got it.

On another angle, I have morphed from various arts, and ended up (so far) on writing.  Maybe there's something else for you, even better or just more fitting to who you are now.

I LOVE THAT PART ABOUT HOW ABOUT I JUST PUNCH YOU IN THE NUTS

oh oh and yeah, Swine Flu and how about the 747 flyover of the President's plane over the Statue of Liberty with the F14s chasing it...  I am lucky I was in radiation at the time, if I had seen that ... like it's not enough already, right? 

BooBee

Great idea for an end of radiation party ladies......a BBQ.  Who came up with that one?

I was visiting some people from the message board when the husband turned to me and said "What makes you think anyone would want to read what you write?"  Rachel...That sounds like something my husband would say and did when I started my CaringBridges.  He criticized everything I wrote until people in the office told him they liked it.  I know it's not the same as yours and Catherine's, I'm not a writer.  What do you guys usually write?  I'd love to read some of it.

Nelia....I'm so glad you're doing better

Martha.....That is so true about simplifying your life.  Do you think we'll keep it that way?

Anyone know how to post photos?  I want to posts some rash and hair photos.

I've been working on my blog for the last radiation.  Here's what I have so far.  This is also part of my husbands concern with my writing.   I'm a little graphic but then again, so is breast cancer.

I've discovered in my 45ish years that there are many different kinds of pain. There's surgery, broken bones, migraine headaches, 3^rd degree burn, the temporary breathlessness of a whack on the funny bone, the hammer on the very end of an appendage; usually the thumb, stubbing your big toe on the corner of the couch and the bid daddy of all pain....child birth.  Guys don't even try to compare the passing of a kidney stone with child birth.  Kick in the crotch maybe.   They're all painful but in very different ways.  I'm here to tell you that there is no other pain like a crispy fried, radiated nipple on a cold day.  None.

BooBee

Is anyone moving on to a Tamoxifen thread or should we keep it here?  I met with my onco today about starting and he gave me some shocking news.  I can't take Prozac any longer with Tamoxifen.  This may sound silly but I've been taking it for 20+ years and the one time I went off of it I cried for two strait weeks.  My Doc tried to put me on a different anti depression med but I don't remember why.

I sat in his office and sobbed.  I've done nothing but laugh and smile in his office through all this.  I figure it won't do me any good to be negative.  I think this really shocked him.