Calling all TNs
Comments
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LRM: lol!
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Babs - I appreciate your words - it helps to not feel alone. This neo-adjuvant stuff can just drive you crazy - you are damned if you do, damned if you don't. You either worry that stuff isn't happening fast enough, or worry that it wasn't the right chemo. My nodes are still enlarged also, though down 50% at my mid-chemo MRI. It drives me crazy, and with only 6 more treatments to go, I worry just like you do. It is reassuring to hear your Onc say that - mine does also. She told me that even if I don't get a pCR, the better I responded to the chemo, the better my stats. Give your little boy lots of hugs - I have three, ages 3, 6, and 9, and while I enjoy the time I have with them, it also breaks my heart sometimes.
MBJ - I had 4 swollen nodes at my biospy, so they were tested. I haven't had surgery yet, and am doing neo-adjuvant so I won't have any clue how many I really had. I prefer to just think it is the 4 and leave it at that, although it can be hard sometimes. I don't know how to put that in my sig line though! And thank you for referring me to that thread...I'll definitely take a look. I've talked a bit about it with my doctor, but have been on the fence about it. Maybe it's time to jump off...
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Just testing to see if I figured out my sig line!!
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Just testing sig line!!
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Suze: Thank you for the clarification. Your Onc is correct: since you are responding so well to chemo your chances of survival are really good. I am sure your surgeon will take out those lymph nodes and test a couple or a few more to be sure, but neoadjuvent chemo is really good for us! I had it and had a complete response. Worrying is natural and I felt much better after having surgery and it was out of my body.
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Oh girls, I love my antidepressants...i take them for anxiety, but now i believe that i would probably have to get them for depression during this stuff...I take Zoloft, the lowest dose and it works like a charm...I told my GYN a year ago i would be a spoke woman for them, because i was a new girl...without major anxiety!..It is a personal choice and you can't worry about what people think or say...If you need it, then its a good choice...remember you don't have to take them forever...just to help you get thru a rough time....
LOL...not trying to be pushy...just love my Zoloft.....lol
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Most everyone gets a Rx for Ativan to take for anxiety during this time. The emotional stress of cancer isn't good for us physically, and if we can take a little off our shoulders right now, well why not! It can also help with post surgical pain by quieting the irritated nerves. I still take 1/2 at night because that's when I get most anxious.
Antidepressants- wonderful! But it does take a few weeks for the dosage to build up in your system. Not sure if something like Zoloft might work faster
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I've never taken antidepressants but have taken Ativan most nights after diagnosis and through treatment. I now take one every now and then and only at bedtime. I took Ativan when my dad was dying, too. For me that is what works.
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Suze - I don't mean to make light of your post, but I have to laugh at your question about obsessing and your onco telling you to stop feeling your breast. I do the exact same thing, to the point that it is ridiculous. Honestly, I lay in bed every night while watching TV, posting here, whatever, and continuously feel my boobs with my free hand. Before my surgery, I could not keep my hands off the lump and generally was feeling around for anything else. One time I caught myself with my hand down my shirt in CVS. No joke! I did not even realize I was doing it. LOL. My breasts, collar bones and armpits are all sore from all the constant poking around. I hope this obsessive phase eventually passes and before I really embarrass myself.
ETA: Ativan rocks. I needed it for anxiety when all this first started because I could not sleep. I tried ambien but it made me dizzy during the day, so I switched to ativan and worked great. I no longer have any serious anxiety issues (although I do have the occassional bad moment but it usually lasts no longer than a few minutes) but have always had problems shutting down my brain at night. Which I guess is a form of anxiety, but not like the cancer anxiety. Anyway, when I was getting a refill of ativan for use during chemo, I mentioned to my onco that I probably should have been on this stuff for years because of my brain racing at night. She volunteered a multi-refill px so I am set for several months of good sleep.
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Suze:
FIrst of all, your fear and anxiety are completely natural. Horrible,but natural, especially since it's still so early for you. It does get better with time, I promise. Not going to lie and say it goes away, but it does get better. I too still have my hand on my breast feeling it too. My nodule was never palpable as it was 5 cms. below my nipple and yearly mammo picked it up, so I am always wondering what the hell I am really feeling for. Like Irr, between my collar bones, right breast and armpits, I am beginning to feel like some sort of pervert, always touching myself!
THe suggestion for some ativan or xanax is excellent. If you don't have any - call for some asap. Even if you break them in half which I did alot of times (and I was only on 1mg of ativan), it takes the edge off and that helps tremendously.
Hang in there, take the ativan, and remain as positive as you can. Your onc is, and that's always a good sign.
Hugs,
Linda
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Linda,
Are you ready for the snow? I live right down the road in Smyrna. I had to work all weekend and am looking forward to the snow day tomorrow. I have a radiation appt at 8:00. I just called and told them unless they call me and say I have to come in (as in it is medically necessary - which I don't think it is), I am skipping that in the morning. I don't want to drive all the way into midtown in the snow and ice for a 5 min radiation appt.
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Suze35 - Just want to tell you something which I know about. Even though breast cancer is different from Melanoma, my boss had melanoma 5 years ago, and they took 17 positive nodes out of him. He has come to work every day for the past 5 years, and doing very well. His stage was pretty high up there, but he has survived and I don't know of any reason why he would not live till a ripe old age. Although I did not have any positive nodes with my breast cancer, I think once they take the cancerous nodes out, one has a very good chance of survival and live till old age. We all are going through the emotions every single day and times are tough, nothing could be tougher. My thing is that I constantly ask God, why did this happen to me? What is the reason? Why me? and then I think, why not me? There are millions suffering from one disease or the other. We are only humans and all of us have an expiration date. Nobody except God knows what that date is for each of us. Trust in God for his divine wisdom, he knows best what we each need. Hugs!!!
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Irr4993 - Please don't mind me saying this, but I suggest you don't miss your radiation appointment. It is important to kill the beast and so do everything 100% the best you can, otherwise if it ever comes back, you will blame yourself. This is not an easy disease to kill and get rid of. So, please consider going for that 5 minute radiation appointment. When I was first diagnosed I was very naive and almost did not want to do chemo and take my chances. But I have learned through all these wonderful ladies what a beastly disease this is and we have to fight this with everything we got. I know a few women, who have been sent home with nothing, as their disease is so advanced that there is nothing left to give them. So, please fight this with all you got. Much love and hugs.
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Thank Heavens! If it weren't for this forum I would have thought I was the only closeted boobie feeler!
Yep, I check mine *way* too often also. Plus, if I don't keep a hand over it my cat walks on it, and that still hurts.
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Lovely - Thanks for your concern. From what I understand you can skip radiation on occasion - if you are sick, have a conflict, etc. In fact, next monday I will miss it for MLK day because emory is closed. Although it is not encouraged, all you do is add the missed day onto the end. With it being every day for 6 weeks, some cancellations are inevitable. What is important is that you get a certain total dosage. So, I doubt missing tomorrow because of inclement weather is going to be a big deal. If they tell me I should come in, and the roads are not too bad, then I will.
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Irr4993:
Wow, you really are just down the road! I am right off Powers Ferry Road, in the Shaded Oaks Condo Subdivision. And I don't blame you at all. I did my rads last October - thru December right behind Kennestone Hospital at the Cancer Center, and missing a day will not be a problem. During the Thanksgiving holiday they were closed Thursday and Friday (not even open on weekends) and we all wondered - duh.... what happens to us as they told us they would be closed both days. Radiologists all said this is normal and they just add a day onto the end. Yours may even be closed, as it's 11:30 pm now and I can't believe how fast it came and it's about 3 inches now. Snow all night and then freezing rain all day tomorrow and tomorrow night, should be housebound for awhile. I'm sure all the northerners and Canadians are laughing at us, but down here in the south - just a dusting stops life as we know it - completely!
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I actually delayed radiation from mid dec until last week because I figured why bother with the holiday disruptions in the treatment. Plus I just wanted a break after chemo for a while.
I am doing mine at emory midtown. They just posted on ajc.com that emory will be open tomorrow and things will go forward as scheduled, but that rescheduling was an option due to weather. I am just going assume it is a no go and sleep in. That 8:00 appt was killing me last week . . . I usually don't head out of the house that early.
I am generally familiar with powers ferry, but not your exact location. I am off of the east-west connector, near its intersection with south cobb drive. The snow has really poured in this area. Everything is completely covered, even the streets. Yes, I am sure those who are more used to it are laughing at us. I grew up in florida, so any time it snows or is icy, I just stay home. I remember it snowing once in florida - all of about 1-2 inches. The entire state shut down - literally - all the roads were closed. At least I did not do the panicked grocery buying frenzy that most of atlanta seemed to do this weekend. My publix was insane.
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Irr4993 - I am so glad to learn that one can miss a day here and there during Rads and that they can add it to the end. I learn something new every day. Sorry for the bad weather there.
HeidiToo - LOL, "closeted boobie feeler"!!!! I haven't laughed like this in a long time. That was funny!
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I am not so closeted about my constant boobie feelings, lol!
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MBJ, too funny!!! I, too am a FoobieFeeler...they are always so cold, I'm trying to warm them up some. How do I know they're cold? uh, Ok!....I had my hand down my blouse~
Good thing my car has tinted windows.
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Ok- another closeted TE "boobie" feeler! When I am just sitting watching TV or laying in bed, I find my hand laying on my iron boob. Like Ruth says, it always feels cold. Hmmmm, don't know if I'm trying to warm it up or I 'm just weird!!
Tiffany
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OK, ladies I have a question. After the neo-adjuvent chemo(I am about to do chemo #5 of 6), then surgery, who did more chemo, then rads, before recon? My BS who also does not want me to have recon until after rads. This seems like a mess to me.
Becky
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mitymuffin, about the fatigue... for me it really started about 3/4 of the way through my 33 rads, and lasted unfortunately for a good 6 weeks. I stilll every once in awhile get a little more tired than I should (I'm 3 months out) -- so I blame residual. Someone told me it takes at least 6 months for the body to flush all these chemo and rad stuff. I'm just trying to be patient. And sleep when I'm tired... but overall, feeling almost 'normal.'
Ativan I didn't take it until about half way through my 6 rounds of chemo, and when I did it was like "ahhhhh sleep!" I have mind racing from time to time, not all that often, but I do. I have taken an ativan at night maybe once a month or so - but I'm heartened to see that others have to, even post-treatment... that gives me some reassurance. Thanks ladies. Again.
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Suze35: I am sorry you had a rough week. It is very stressful to try to determine how neo chemo is working. I was constantly feeling also. My onc gave me Lexapro to help with anxiety and also with hot flashes that come with chemopause. I also took Ativan occasionally.
Here is a good story: I talked with a woman who is triple neg. who had a large tumor. She had neo. chemo, it shrunk by about one half, then she had surgery, and is doing fine 3 years later. I like to hear stories like this so I thought I would share.
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I must admit I am a closeted boobie feeler, but mostly at night when I am getting into the bed, ha! ha! LOL!
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Raising my hand and joining the crew I am a closet TE feeler! LOL
Lovelyface, I rub and feel everything @ night its a habit now
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While I was going through radiation I had to miss a total of 5 days straight because of a burn and pain that I was feeling in my left breast. They just added them to the end of the treatments. The radiation oncologist was more worried about the extreme fatigue I was feeling and my low blood counts not the missing of treatments as long as I finished all the required treatments.
I am also glad to know that I am not the only closet feeler. I also have a habit of rubbing and feeling both of my breasts now
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My rads tech told me that the doctor believed you needed at least 3 treatments in 1 week for it to be effective so missing 1 day should not be a problem.
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Ugh - I hate that I can't post from my iPad!!!
I had chemo today so am feeling like crap, but I really want to thank you all for making me feel so much better about my boob fetish!! Even my doctor today admitted she would probably be the same way, lol. She did tell me to leave the nodes alone, that they can swell from the irritation.
On a positive note, she is still very happy with my progress. She can feel what she said is either bits of disolving tumor, or scar tissue. But she estimates I have had a 90% reduction. Of course, we won't know anything until surgery, but it is still good to hear.
I want to share a sad, but inspirational case - I ran into an old friend/co-worker at chemo today. She was diagnosed in 12/07, and had let a very large tumor go 6 months before telling anybody. She finally told me and I made her get to the doctor. It was TN and she did not respond very well to the chemo, and unfortunately she had a recurrence earlier this year, but I had lost touch with her and didn't know. But she is so wonderful and inspirational, and handles her situation with such grace, it was so nice to talk with her. She is older (70 now), so doesn't have the same concerns about kids, but she really made me feel better, even when facing her own future. She is currently stable and gets to be off chemo until she progresses, which was good news.
This disease sucks. But I am feeling so much better today with the help of you all - and I asked my doctor for a referral for a therapist. I already take Ativan at night to sleep, and think maybe I just need someone to talk with for now. But I won't be afraid to take the next step if I need to, thanks to the insight I've gained here.
I'll be MIA for a few days, but my best to everyone.
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Another 'feeler', here! I felt my lump obsessively throughout chemo, and now after the MXs, I feel the incision lines for lumps. I manage to control myself through the day, but when dressing for bed or keeping the cat off me (me too, Heidi), I'm constantly feeling myself up there.
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