March 2009 Rads Group?

So good to hear from everyone and to know you are all doing so well.  I'm on the Arimidex, and it seems that that the night sweats and hot flashes come and go --- and I can't figure out what does that.   So far, I can't relate it to anything that I'm eating or doing.  Some nights, it is just horrible and even an ice pack doesn't help.  Other nights seem to be ok.  If I knew the trigger, I'd work on that.

I'm a little worried today and wondering if I should call my oncologist.  I had a mastectomy, and the surgery scraped me down since it was so deep -- right up against the chest wall.  Now that all the swelling is down from the surgery and all the crap is gone from the radiation, I'm just starting to feel what's really there.  I can't tell if there is a hard lump or if that is one of my ribs that I'm feeling.  It's just above the stitch line, and it's about an inch wide that I am feeling.  Gives me the creeps!!!!!  Most of the area is still numb -- don't know if feeling will ever come back, so I very seldom run my fingers over it.  But I carried too many bags of groceries in the other day and it was hurting, so I was feeling it and found that lumpy thingy.  How long do I wait??????

Kristi- there is an hilarious thread on here it's called something like "Let's figure out where we got cancer from" (linked) .  Check it out when you are going batty worrying if the Chef Boy Ar Dee speghetti you ate as a kid gave you cancer... it's just too damn funny.

Renee- I asked my ONC about the slapmesilly and take my ovaries surgery you had and he said yes, it's well tolerated but sometimes makes for big menopause symptoms (what else is new, right?) so he said see how I do on Tamoxifen first.  Maybe like I will go through whatever changes from the Tamoxifen and then the Zometa and then do it.  THANK YOU SO MUCH for bringing it up and reporting how it went for you.  I think I will go for it once the Tamox thing is settled, and then after the 5 years on Tamox I'll ask for a PET CT scan.  Does getting the slap me G oophy thing end periods?  I've got it again and I swear it's competing with RADs fatigue for putting me out of commission... and embarrassing as all get out.  They just don't make pads big enough for me any more!  I have to be careful where i sit!  Jeez!

As an aside, I went to see a plastic surgeon today, I actually had appointments with 4 PS's this week.  I was always going to go around this age, just to see what kind of options I had to preserve my skin, and because I wanted to avoid hearing them say I could have had some simpler surgery or treatment if i had come in earlier, rather than showing up with all kinds of wrinkles, bags and spots and such and them bringing out the big saw...  Surprise for me, this PS was actually in the same office as my BS!  Weird.  The rest was all pretty great news.  She said I had come too early and was too young (I made her say that part twice.)  I asked if anything was going to change on Tamoxifen, anything about collagen and estrogen blah blah- the answer is NO.  Yay again.  She did think it would be more difficult to lose weight on Tamoxifen, so my plan is correct- but I just gotta drop this weight and be a good girl this summer.  (HA! Riiiight).  She also said that everyone was supposed to get their moles checked yearly by a dermatologist- I had no idea.  But she could not do the mole check, and there's some laser stuff I could do with the dermatologist, so I should schedule that.

So then I went to the second appointment, but the first one cost me $350 and the second was going to cost another $250, and I was waiting waiting waiting for the appt... and all the people coming in were pretty annoying, this was a very fancy office on Park Ave.  Then I heard the phoneanswerer being not so nice to a patient on the phone.  The patient wanted to know what they would be getting for their $250 and the phoneanswerer was telling the other phoneanswerers how rude she thought that prospective patient was.  That patient sounds pretty damn reasonable to me, and I wanted to know what the $250 was for too!   I had arrived 15 minutes early adn they said he would be on time for me.  It was already a half hour past my appointment time,.  I started thinking maybe there's a reason why I was waiting... to give me a chance to get outta there.  When I got to the phoneanswerer's counter, she was of course on the phone.  She was saying to a patient something like "Well yes, there's going to be drainage and some blood and...." I scribbled a note saying I had to go and to please cancel my appt... and ran out the door!

Blue - I have been trying to teach him sign from the very beginning.  The DVD I have said the first thing they learn is "more"... but a friend said the first thing they learn is "no".  My dream was not only that he'd learn sign but also that he'd learn the sign for "toilet" so I could start the potty training.  Oh well.... I keep plugging away at it

On the baby food maker, this is the one I have: 

Its the Beaba Baby Cook

so if that's what you are thinking of getting for your DIL, I would say skip it.  You are right, a little cuisinart (I have one of those $35 jobs too) is more functional and the Beaba really doesn't do anything.  It's like a little mini steamer and mini mini cuisinart, its easy to clean but that's it.  I can't figure out what all the fuss is about.  I thought it did more, like making sure the food was all uniform and safe or portion control or something but noooo. You can see on the image, it has only two functions, steam or cut.  Lemme know if you want mine, I'll pack it up (I have all the original packing and stuff) and send, just pay for sending.  I don't have the counter space for something I don't use, and I am going back to the little cuisinart!  Thank you for the wholseom baby food link, I will study  HURRAH for you saving a life!  

Sam- cool, I didn't know abotu the freebies at the Susan Komen things, I organized a couple drives for them before I had BC, but now I will check out their races! Of course I totally agree with you about the people who just take.  Grrr.  On the hot flash/recurrence thing on Tamoxifen, i will hunt hunt hunt for the thing that discussed this at length... its one of those many cancer paradoxes... although having hot flashes on tamoxifen has been shown to have even lower recurrence rates, NOT having hot flashes on tamoxifen still reduces recurrence rates by the 30%- it does NOT mean that the Tamoxifen isn't working.  It does NOT mean you have a higher risk.  And you said you are having hot flashes, it seems you have the ideal situation, the one I am hoping for... just enough hot flashes to know it's working and has even lower recurrence rates and also not being such major hot flashes as to cause a whole new set of problems.  So, I'd say, don't borrow trouble you don't have!  I am sorry if what I said gave you the impression that you were any less safe, I was just trying to make the other gals who are really having some major hot flashes feel better.  And myself, in case I got the big ol tidal wave hot flashes... Also, note that you didnt have big problems on RADS so maybe you are just not a big side effect person- be happy about that!  

I don't really get why they'd do a hysterectomy and not a slapme G oophy... they keep saying they can pretty easily tell if there's uterine cancer during a normal gyno exam- and that's what the hysterectomy is about, right?  Uterus?  But the ovarian cancer is so hard to detect adn there's the whole drink a ton of water while we "wand" you ultrasound trying to find ovarian cancer... and hysterectomy seems to be bigger surgery with big recovery while slap me G oophy seems to be a drive-thru...???  I just don't get it.  I haven't done the research though.  

Mary- so yesterday i was useless for the kid... and when my head was turned (watching TV, I admit) he grabbed my buttered toasted rye bread.  For a moment i tried to grab it back- which was pretty funny, he had two strong fists grabbing the piece of bread, so what was I going to do, shred it?  But hey, if he wants to try... so he put some in his mount and i heard the CRUNCH... and I was thinking... maybe he'd like it... but... spit that out too.  Like you say, I'll just keep trying, and he'll keep trying... Today I ate a cookie in front of him.  He was mystified.  I said- don't worry, you'll like cookies, and there will be a lot of them in your future!!!  

Martha- I try to keep in mind the triple negs and not to look the gift horse of Tamoxifen in the mouth.  Thank you for perspective! There's a lot of that feeling of not doing anything about it going around.  On one side of the fence, the constant pressure for half a decade of every single day having to do something about it, never can forget it, but on the other, nothing to do but was it after 2 or 3 years the recurrence for triple negs really drops big time?  So it's 5 years of terror plus side effects or 3 years of terror and no side effects?  Fun fun fun!

On the ride home thing, they finally wised up around here in Manhattan.  Most of us aren't driving home, so if we have an address in the city they are more often letting us go if we promise to hail a taxi.  But it's more than that of course, so wonderful you have a friend who will come get you at crazy morning hours to accompany you for this.  It's a pressure too, but its part of the allowing other people to help you.  I am happy for you, happy the port is coming out and happy they are doing it at the hospital. As you are leaving without it imagine the sound the great ocean liners made in the movies with that deep blast ... Heave Ho, Achors Aweigh, the Ship is moving out of Port TOOT TOOT! 

Hey Ladies...hope everyone is doing well.  Question - and maybe this has been asked and is somewhere in this thread but... I am 7 weeks post rads my skin had totally healed up, everything was ticking along nicely.  Then about 2 weeks ago I noticed that the area around my collar bone where I had rad burns started to develop these small itchy "blister" type bumps.  ITCHY!!  I was putting some anti itch cream on them and they eventually disappeared.  Now they are back in exactly the same area.  Anyone else have this problem weeks after they finished radiation?  

Purpleme, I finished April 15th, and still have those spots.  I also have them on my back and they DO itch.  It's not blisters, and hardly noticable, but I can FEEL the difference in the skin.  I still put a lot of cream on those areas. 

Marymoir, please share the link?  I will keep looking for the stuff i found that said that the lack of SEs DOESN'T mean higher recurrence... 

Meanwhile- blue, I am going to put the Beaba up for sale to my Mommy group... 

YEA TORCHSONG!  I am doing my happy dance for you too!  I bet that feels

wonderful to have that out finally!  Congrats again! 

 Hugs, Jeanne

Martha...fantastic, I'm so happy for you!!!

ReneeS...the menopause sweats - naturally or drug induced totally suck.  While I am sure another drug is the last thing you might want, is there anything your onc can give you that might tone down the sweats?

What a day. Not sure if it was from stress or forgetting to take tamoxifen and Effexor this am. The kids were cranky this AM. First day of summer and rain!!!! Then it was time to go to Speech Therapy and my windshield wiper broke(the car is only 1 year old), in the pouring rain. I took back roads to my hubby's job and he fixed it. Then the gas light came on. I stopped for coffee and realized I left my money in my other jeans, Thank goodness the kids had enough money to pay. Went to the bank ( yes I am one of the few who do not have an ATM card and no credit cards). I got gas then off to speech, no place to park, made it just in time!!!! By the time I got home I was completly stressed. I am finally starting to relax. I took my meds when I got home, so not sure if that was the big help or the fact that my hubby is now home from work and it is almost bed time for the kids! And what does this have to do with bc, I guess I just needed to vent. Before BC, I would not have been so frazzled. Sorry to be so long winded.

Hi Everyone, just checkin' in.

I'm so glad you guys are still here. And that you have all bonded so well. I tried just forgetting everything for a while, thinking that would help me get past this more quickly, but it didn't really work. Cancer/tx recovery sure takes lots of PATIENCE!!!  What happened to my old life? It's like I'm having trouble caring about all the things I used to care about. I'm sooooo tired the last few weeks. No motivation.  I tried writing down a long list of goals, and strategies for getting there. You know, really re-thinking my life and taking stock. But I'm still just stuck. Like swimming through molasses. I've always been so focused and ambitious; an idealist.

Nelia, and Rachel, I know you've expressed this feeling of fatigue in other words, and Martha, that "gray feeling". So I tried walking on the beach again, which always makes me happy and feeling better, but by tonight, back in the funk. ARRRGGHHHH!  Is it because I am alone so much? I have friends and extended family, and of course my 17 yr. old DD, whose goal it is to be home as little as humanly possible. I could get out there and join things and do things, which I occasionally do, but it seems to mean nothing, like a feeling of being disconnected. I miss my hair, my energy, having my own family, feeling centered.

Oh well, ME, ME, ME!  It will take some time to trust our bodies again. It will take some time to feel that core energy, to care about doing stuff, to relate to others like we used to. I just wish I could figure out how to start caring about myself again...how selfish am I?  I do care about others, and am always there for them. I'm trying to nurture myself so I can nuture my loved ones and friends. And I am grateful for all I do have, but I feel like an empty shell! Is this really radiation fatigue? Is the chemo still lurking in me? Anyone else have questions like this swimming through their heads?

Sorry to be a downer. Not like me. Thanks for being here, all of you. And I'm very happy for all of you who are getting better and feeling well.  

P.S. Yeah, one of my ribs did swell and get sore, above my breast on my upper chest. Like the first rib on the top. The rad onc felt it and thought it was okay, just a prominent rib. 

Don't you think sometimes that we are too hard on ourselves?  That we haven't even given our bodies or our minds time to heal?  And, that is where the frustration comes in?

Maybe, because others see that our treatments are finished, so, they think we should be "normal" again.  ( which is never going to happen lol)

Bc changes you, some for the good, and, some for the bad.  But, it changes one.

But, we have survived it and we will continue to survive it!  And, there is such a beautiful world out there, that we have to take the time to enjoy it!

Each day is precious.  So, I hope all of you have a great day today! 

   Jeanne

Renee -- sorry to hear about the night sweats!!  I thought I had it bad during "chemopause," but nothing like what you're describing, you poor thing!  BC is just the gift that keeps on giving!!  Fingers crossed that you get some relief soon...I think I heard somewhere that for many people the symptoms often abate after several months...here's hoping that works for yoU!

 Rachel -- I started a thread on the lack of hot flashes & recurrence risk in the "Hormonal Therapy" topic...the links my friend sent me are posted there.  I was reassured when one woman replied that she was worried for the same reason but just found out she was an "extensive metabolizer."  My onc RN said my test came back "fine," but I didn't think to ask her whether I am an intermediate or extensive metabolizer.  I'm supposed to speak with her on Mon., & will ask her about it then.  Good

Hi guys,  I'm off to my oncologist for my 3 month checkup/bloodwork, after my month checkup after chemo. I guess he willl map out more clearly what the followup tx will be. I know I have a mammo in Aug, then chest scan again in Sept. since I had some benign nodules, it's routine. Then breast MRI 6 months later.

But I just wanted to thank you all for sharing your comments/commiseration. I was having a bad night. I feel a little stronger now, with all your positive energy coming my way.  I'll be fine. I'll be okay, as all of us will.  Have a great, restful weekend, everyone! 

oh martha, i so know what you mean.  people are so kind and say how much they admire my strength, etc, but like you - i just want to keep living.  did what i had to do, nothing heroic about that!  i'm so sorry you guys got rained out, but glad you got to do a lap at least...

hope everyone is feeling well this weekend;  i think we are having the rainiest june ever here in kc - wish the sun would come out!