Dis Breast Cancer Survivors - GAGWTA!

[Cruise04]

Thanks for prayers for my friend and her mom. I was busy with a family reunion this weekend so haven't had a chance to find out how things went on Friday.

Many, many, many prayers continue for you all. I found out one thing this weekend - people who have had a positive experience with cancer think that the doctors mess up those who didn't and are quick to blame the doctors without knowing all that was gone through before the loss happened. My aunt (by marriage who was diagnosed a few months after my mom) was quick to make that judgement this weekend to my husband. It made me very angry because I, also the caretaker, was the one that experienced everything my mom was going through. UGH.....

I agree - thanks for starting this thread Laura - even though I'm not one of you, I am in a sense. (hope that made sense). And good luck this weekend with your race!!!!! I'll be thinking good thoughts for a good time. Ours Relay for Life is in two weeks - we aren't racing but we'll be there for much of the festivities and through the luminary ceremony where I will cry like a baby remembering my mom. I have to get my donation in yet to my friends daughter. I have to tell you something cool about our Relay for Life - there is a group of kids, from now 3rd grade to sophomores in high school, who have put together 2 teams three years ago and they are the highlight of the weekend - it's always great to see how much they have raised. Two years ago they raised the most money -these 2nd through 8th graders. I was so proud of them and so proud to have sponsored them and knew them personally!!!!!!

 

[Miss Mickey Mania]

laurabelle, racing lady again! Have a great time.

Imzadi, I truly hope all goes ok for you on Friday. I'll watch the thread for news from you.

News from me and my mum - she went for her 4th chemo yesterday and was sent home, cell count was too low to go ahead. She'll have to go next week instead. This has happened every time so far, so she's had chemo every 4th week. The doctor said that she's just one of those people whose bone marrow takes longer to get busy again. The funny thing is that she feels very well!

Oh well, there's nothing she can do about it. It just means this treatment is taking a LOOOONG time!

Louise

 

[JoannaOhio]

News from me and my mum - she went for her 4th chemo yesterday and was sent home, cell count was too low to go ahead. She'll have to go next week instead. This has happened every time so far, so she's had chemo every 4th week. The doctor said that she's just one of those people whose bone marrow takes longer to get busy again. The funny thing is that she feels very well! Oh well, there's nothing she can do about it. It just means this treatment is taking a LOOOONG time!
Louise

I had the same problems with my chemo, back in 1994. Toward the end they even started giving me shots of neupogen(sp?) to bring my white cell count up. My six months of chemo stretched out to 8 months because of this. As I recall, I usually felt pretty crappy for the first two weeks after chemo, then quite a bit better the next week. The only consolation about postponing the next round for an extra week was that I got that extra week of feeling fairly well before I felt crappy again. Tell your mom that I said to hang in there and try to be patient. I know it seems like a really long time, but she will get to the end of it!!! (and, hopefully, the end of her cancer worries, like me - now an 11-year cancer-free survivor.)

 

[NHAnn]

Imzadi, I will be thinking of you Friday. Do keep us posted!! I will also be thinking of a woman in my support group who is having her lumpectomy and a sentinel node biopsy that day.

laurabelle...enjoy the race, thanks for taking us with you and again thanks for starting this great thread!

Hello to all....and prayers and pixie dust to whoever is in need!

 

[snappy]

Imazdi, how did it go?
Kelly, did you find out if you'll have to have IV anitbiotics?

Have a good weekend, everyone!!

 

[Tinkertude]

You'll all be riding on my back with me!

And proud to be there!

 

[Pea-n-Me]

laura, hope you are having a great time!! I'm honored to be on your back!! I would like to do the same for the group at my Relay on Friday, I'll give it some thought and let you know how later in the week.

Kelly, wonderful news!
Imazdi, hope your biopsy went ok and you're doing well.
snappy, my MRCP is scheduled for early July - thanks for your good thoughts.

I was saddened to hear at work last night of a 33 yo woman in another department who just found out she had breast ca with brain mets. She has 3 young children. Apparently she's had a lump for a while but was told it was a cyst. I don't know any more details right now but that makes me so angry!! Can we keep her in our prayers?

Enjoy the weekend everyone. Have a nice Father's Day with the fathers in your lives! And a special Happy Father's Day to you Dan, I'm bummed I won't be able to make the Boston Dis meet on Saturday - especially wanted to meet you in person and NHAnn.

 

[Disney Debbie]

Hey - Just found this thread! My brother told me about it.

July 5th will be my one year anniversary as a survivor. I had inflammatory breast cancer - a real nasty aggressive one that pretty much came up overnight! Anyway - 8 rounds of chemo, about 10 rounds of herceptin, surgery and 35 radiation treatments later - I'm cancer free! I was actually cancer free at surgery but had the radiation as a precaution since mine was in the lymph system. I had a bi-lateral even though the cancer was only in my left breast. My chemo put me into early menopause and the onco is giving me shots every 3 months to keep me there so I can take arimedix.

I've recently developed a VERY mild case of lymphedema - which really sucks! - but after only one week of therapy and wrapping the swelling is pretty much gone. The OT is going to fit me with a sleeve Tuesday and probably release me from therapy.


I haven't read this whole thread so if I'm repeating something - forgive me - but has anyone else felt this way? I did beautifully all through treatment - had a great attitude - felt good most of the time - never really felt afraid that I was going to die even though I was a Stage IIIB. But now that I'm through the worst of it - I'm apparently turning into a B*tch! I say this because my family and my closest friends have noticed that I really seem to be snappy and moody lately. When I had some swelling of my feet over Memorial Day I started crying because I was afraid it was the lymphedema (it wasn't - it was a combo of flying and 6 margaritas at a party!!) I mean I hardly cried at all over the cancer - but I get so mad with all the crap that's coming up now as a result of cancer - hot flashes, lymphedema, fatigue. I'm starting an exercise program at the wellness center here in town next Tuesday so I hope that will help.

Anyway - sorry this is so long!!

 

[Tinkertude]

I had the feeling that I dealed with the cancer so I should get a break on the side effects. ie. being thrown into menapause, the hot flashes, the lymphedema yeah I wear a sleeve everyday and sleep in my $500 sleeve every night (looks like an ovenmitt to my armpit, sexy real sexy) But then I tell myself atleast you are alive. I think the journey changed me forever, I don't have time nor the patience for trivial stuff anymore or petty people.

Really glad you responded to tx. for your lymphedema I suggest you talk to your theripist about what type of exercise and the intencity level you should work. I joined a club for the water arobics and they kept the water at really warm for the authritus suffers, it made my arm swell more .

 

[Disney Debbie]

I had the feeling that I dealed with the cancer so I should get a break on the side effects. ie. being thrown into menapause, the hot flashes, the lymphedema yeah I wear a sleeve everyday and sleep in my $500 sleeve every night (looks like an ovenmitt to my armpit, sexy real sexy) But then I tell myself atleast you are alive. I think the journey changed me forever, I don't have time nor the patience for trivial stuff anymore or petty people.

.

I agree with all you said! I guess my feelings are sort of like the let down after coming back from a great vacation - not that cancer was a "vacation"! but you just think you're done with all that - but you aren't - EVER! And I am VERY glad to be alive - but that doesn't stop me from getting in a funk about this stuff. I've decided if my exercise doesn't perk up my attitude I may ask for some Paxil or something. I just feel like all the depression stuff is hitting me now - delayed reaction or something - but it also could be the menopause I guess. I'm not nearly as bad as this post sounds - anyway I don't let most people see that! - but I'm definitely not my normal chipper self lately.

I did discuss exercise with the OT and with my doc - they both said more reps, low weight would be fine. Which of course having to discuss every little thing with the doc pisses me off as well!

Aren't ya'll glad I found this thread? Aren't I just a ray of sunshine?

Honestly - I think I'm just having a bad week!!

 

[Tinkertude]

Actually I am glad you found us. We make each other sound normal.

 

[JoannaOhio]

I agree with all you said! I guess my feelings are sort of like the let down after coming back from a great vacation - not that cancer was a "vacation"! but you just think you're done with all that - but you aren't - EVER!

I haven't posted anything about this previously, but I'm not only a cancer survivor, but also an incest survivor. Your comment reminded me of how I think I've completely dealt with the effects of childhood sexual abuse, and then - BOOM! - something triggers stuff again.

I am VERY glad to be alive - but that doesn't stop me from getting in a funk about this stuff. I've decided if my exercise doesn't perk up my attitude I may ask for some Paxil or something. I just feel like all the depression stuff is hitting me now - delayed reaction or something - but it also could be the menopause I guess. I'm not nearly as bad as this post sounds - anyway I don't let most people see that! - but I'm definitely not my normal chipper self lately.

Being plunged into "instant menopause" is a real downer! I also think you're right about a delayed reaction. I think that I held up pretty well through all the treatment - partly because I was "doing" something. Once that was all over, I couldn't help wondering at times if I was just waiting for the cancer to come back again. After 11 years, I am finally beginning to trust that I've been throught the worst of it. I don't think it's at all out of line to discuss antidepressants with your doctor. It might just be the little boost you need right now.

 

[Dan Murphy]

Just stopping by to say hello to a real classy group of women here. Those new here on this thread have found some really good support, knowledge, experience here. Stay close, wonderful support.

....I think the journey changed me forever, I don't have time nor the patience for trivial stuff anymore or petty people...

Tude, Marie feels the same way. Me too. You learn real quickly what is and is not important.

Laura, thanks for that wonderful movie link. I put the link on my desktop, have to show Marie. She is resting now, been having problem with gall bladder. Hopefully she will get it out soon but keeps putting it off, tired of doctors. She is due now for her 6 month follow up, I have to get her to open up on this too.

Linda, thanks for the good wishes, wish you were going to be there too at the Boston meet.

 

[Pea-n-Me]

Good Morning Everyone,

Just a quick hello to Tammy/Shugardrawers to say hope things are going well and that you're feeling ok. You must be well into your chemo by now. Drop a line when you can to let us know. And scratches to Petey...

Joanna, to you. It must feel so nice to be 11 yrs out, but I'm sure it's been a rough ride. Sorry you still have to deal with all the other stuff too.

We make each other sound normal.

Ain't that the truth!!

Debbie, welcome, glad you found us also. Although everyone's experiences are unique we all share the common bond of having our lives altered by a life threatening disease. We're all familiar with the fears and sadness that come along with such a diagnosis so you're in good company here. Most of us have had breast cancer of all stages but there are some with other diseases such as peritoneal cancer and AIDS. All are welcome. It's nice to know we're not alone with our burden.

I also am a recent survivor. I finished treatment last July after having surgery, chemo X8 and radiation, not eligible for tamoxifin. I'm actually feeling pretty good psychologically right now though I do occasionally have those fleeting moments of sadness and fear, mostly when I'm watching my young children. (Luckily they are fleeting).

I did, however, have a truly awful time last spring when I was deep into chemo, steroids and menopause, and spent many nights laying awake frozen with sheer terror. I found it very isolating because it was hard to share my true state with anyone, even other survivors. I was trying hard to meet a self-imposed expectation of being "strong" and "positive" (which I now know to be a burden), and when I did share sometimes people would get a strange look on their faces, LOL, and either say no, that didn't happen to them or maybe offer their opinion that I should go on medication, etc... so I kept it to myself for the most part but did have a support group, and sought out the help of a social worker to talk things through when I was at my worst, she always made me feel better.

It must be even harder for you since you probably get the sense people think you should be "over it" now, and well on your way to feeling "better". All I can say is the timing is different for everyone. I recognized it as a grieving process, one in which you have to grieve the loss of your previous good health, sense of well being and innocence about the future. During Fight or Flight, which I liken to going through treatment, sometimes we don't have it in us to take on that additional emotional burden, so many people feel the "letdown" after treatment and start their grieving process then. I guess I'm glad I got it over with when I did, but it sure was a painful process. Hang in there and you can vent here anytime or PM me if you want.

I too had a run of mild lymphedema this winter/spring, also after flying. It was a pain going to PT twice a week in addition to many other doctors appointments and tests I've had (for what is most likely my gallbladder). Luckily it's pretty much resolved now. I know it sounds like a cliche but I have found that eating well (well, trying to, at least ) and regular exercise has helped me stay in a good state of mind since both have been shown to improve survival odds and it helps me feel I'm actively doing something to help myself. Personally, I think that salty foods contributed to my lymphedema (so much for the MYW Dining Plan) so I try to avoid those now if I can help it. Not easy when much of your life is on the run.

Hope you are feeling better soon from another ray of sunshine!!

 

[Disney Debbie]

You guys are great. I'm crying here right now and have to run to church - but I started this day off as badly as the last few. These posts have really, really, REALLY helped. I'm not crazy or being a big baby. Thanks - I'll try and get on later after doing all the Father's Day stuff but I think I can get through the rest of the day without taking someone's head off.

 

[snappy]

Dan,

Marie sure is lucky to have you to nudge her in the right direction on the gall bladder issue. I can understand not wanting more surgery unless absolutely necessary. I even feel that way about medicines.

Have a good father's day, Dan.

Welcome, Disney Debbie. Glad your brother told you about our thread. He sounds like a sweetie.

 

[mickeymost]

Just wanted to say a quick Hello to everyone and give an update on my most recent adventures.

The Keflex wasn't really doing it's job, so the doc sent me for an aspiration of the fluid surrounding the implant. He didn't want to puncture the implant, so sent me for US guided aspiration. Well the radiologist got about 40 -50 cc of infected fluid out, BUT punctured my implant!! DO YOU BELEIVE IT? So far there has been no deflation of the implant, the Plastic surg. says it is possible for it to self seal, time will tell. The good news is with the fluid gone, the redness is all but gone. Antibiotics for another week and watch for deflation. I'm hoping I got lucky, I really don't want surgery again!

Welcome Disney Debbie

Hope everyone is doing well

Kelly

 

[snappy]

Gosh, what luck you have, Kelly. At least the redness is gone, but now having to waiting to see if a leak surfaces. Hope you are spared that.

 

[Lil_Tink]

Congradulations.. I have not had breast cancer and am glad... (as i am 14) and hope that no one gets it... Thank god you survived

 

[ScarletFire]

I completed five months of chemo last week.

I was diagonosed with DCIS last November at age 38. I had my right breast removed and reconstructed. My surgeon found a 2cm tumor during surgery and recommended chemo. I had no lymph node involvement. Since the tumor was estrogen positive, the next step is an anti-estrogen med for five years.

I'm still sporting a baseball cap and my fingernails are a mess. A hot flash wakes me at 3 am every night. But, my body is slowly returning to normal. My port is coming out on Friday.

I discovered this thead today and it made me cry. It's still difficult for me to read or talk about breast cancer. My community has a breast cancer support group but I've not yet had the courage to attend, maybe next month. Posting on this thread is a huge step for me.

My husband, kids, and parents have been very strong and supportive through this ordeal. We're going to WDW next month to celebrate my completion of chemo.

Denise