Dis Breast Cancer Survivors Part II -GAGWTA!

[SeaSpray]

GAGWTA

Just wanted to stop in and say hello. Less than a week until I found out if I have the mutation or not. Every time I say the word "mutation" I remember a scene from the original "Back to the Future" movie where the farmer sees Michael J. Fox in the yellow "space suit" after he crashes the Delaurean in the barn and the son yells to him "See?! It's an alien and he's already mutating into human form!" then the farmer aims his rifle at MJ Fox and says "Take THIS you mutated son of a *itch!" I know, I'm nuts, but at least it makes me laugh.

 

[disneyholic family]

GAGWTA

Welcome Disneyholic! I am so glad your mom is doing so well! Your sister sounds like she has been through a tough time! I am semi-regular poster since I am just finishing up treatment for stage 2 breast cancer. Its been wonderful to have the girls and guys from this thread to see me through the darker hours!

GAGWTA!

hi!
are you going to do something special now that you're finishing up your treatment?
like a trip to WDW?
my mom was stage 3 when they found it and is doing super great ...
the year right after her treatment, she looked like she'd been through the wringer...like she had aged years...
but what's amazing is, a year later she started looking younger and younger....her body actually rejuvenated, even though she's as old as she is..
it's amazing....and she looks great now..

GAGWTA

Just wanted to stop in and say hello. Less than a week until I found out if I have the mutation or not. Every time I say the word "mutation" I remember a scene from the original "Back to the Future" movie where the farmer sees Michael J. Fox in the yellow "space suit" after he crashes the Delaurean in the barn and the son yells to him "See?! It's an alien and he's already mutating into human form!" then the farmer aims his rifle at MJ Fox and says "Take THIS you mutated son of a *itch!" I know, I'm nuts, but at least it makes me laugh.

funny!...yes, the word mutation also makes me think of aliens or something like that...

 

[jackskellingtonsgirl]

GAGWTA, Ladies!

~~~***GAGWTA sistas***~~~

Well of course I'm awake! I made myself lay in bed until after 3...
Just wanted to pop in and say farewell. It's foggy here this morning, so I'm keeping a watch out for delays before we leave for the airport. It's supposed to be upper 80s today and 80 tomorrow in WDW! I can't wait to feel the sunshine!

Normally I am doing my Methotrexate injections on Fridays so I decided to do it last night instead. I don't know what it is, this is my 4th shot, but I am having a hard time doing it to myself. I had no problems with the Humira pen injections, but something about stabbing myself with the syringe... So I set myself up in the bathroom, the needle popped off the syringe, I popped it back, but I think it messed up because I had a hard time with it. I started feeling woozy so I sat on the edge of my tub and called out to hubby, but he didn't hear me. I didn't want to stand up...next thing you know, I passed out and they heard the crash and came running in. Wow, I hit the tile hard even from a seated position. I'm fine, just not happy with myself for wasting a dose and being such a baby. I told hubby either he is going to have to inject me or somebody else, I just can't. I might have him do it this morning, I just want to get it over with so I can relax and have fun!

WDW here I come!!!

Laura - I am so sorry about your injection! I hope you have a magical trip! I am looking forward to reading about it!

So Mom is now finished with 8 of 12 of her Taxol. I called her tonight to see how she is doing. She said she has some neck and shoulder stiffness, no big deal. And, oh yeah, she has lymphedema in her right arm and hand. She said it has been that way for THREE WEEKS. I don't know why she is JUST NOW mentioning it. I told her she needs to talk to the doctor and find out how she needs to treat it, because it can be serious. She just kind of pooh-poohed it, says it will be fine. She said if she wraps it with an Ace bandage it hurts, if she leaves it alone it feels OK. She has been carrying some things that were heavy, lifting some things at work, basically doing things she should not be doing with that arm and now she wants to just downplay the swelling.

Suggestions, anyone?

 

[snappy]

JSK, your mom needs to address this I believe ASAP with her doctor.

I have not had to deal with lymphedema, YET. I am a realist (except when at WDW) and I understand the lifetime issues with lymphedema. It can be a chronic thing that never goes away, that is why I am alarmed for your mom.

I am always careful. Period. Is it possible she was not given the precautions that are necessary?

I believe others here have had to deal with it. Hopefully, they will chime in or pm you.

Do you know how far it has progressed ( how much swelling)?

 

[jackskellingtonsgirl]

JSK, your mom needs to address this I believe ASAP with her doctor.

I have not had to deal with lymphedema, YET. I am a realist (except when at WDW) and I understand the lifetime issues with lymphedema. It can be a chronic thing that never goes away, that is why I am alarmed for your mom.

I am always careful. Period. Is it possible she was not given the precautions that are necessary?

I believe others here have had to deal with it. Hopefully, they will chime in or pm you.

Do you know how far it has progressed ( how much swelling)?

I told her she needs to call her Dr. on Monday, but that was when I was under the impression that the swelling JUST started. Then she said it has been 3 weeks! I told her I am not sure it can be fixed so she needs to take care of it. She knew the precautions, she just can't be bothered to be careful. She said it is better than it was, but not back to normal, if that tells you anything. She really prefers to ignore things, so I bet she will ignore this as long as she possibly can, just like she ignored the cancer. She has a Dr. appointment Thursday - I think with the onc - so HOPEFULLY she will address it with him!

 

[snappy]

GAGWTA

Just wanted to stop in and say hello. Less than a week until I found out if I have the mutation or not. Every time I say the word "mutation" I remember a scene from the original "Back to the Future" movie where the farmer sees Michael J. Fox in the yellow "space suit" after he crashes the Delaurean in the barn and the son yells to him "See?! It's an alien and he's already mutating into human form!" then the farmer aims his rifle at MJ Fox and says "Take THIS you mutated son of a *itch!" I know, I'm nuts, but at least it makes me laugh.

Glad to see you post.

Waiting for results can seem like torture.

Love your sense of humor. It made me laugh too. Thanks for that.

Please keep us updated.

Love your username by the way!!

 

[snappy]

GAGWTA!!

Happy weekend to all, esp Laura and DH at the BC!! Hope there are no ill effects from the fall!!

I feel like a wuss complaining, especially when others are in much worse situations, but I just want to "unload" and move on....

I feel as though I'm 91 not 51! Shortly before my RFTC trip, my left wrist bothered me, felt like a bruise on the inside edge of the wrist joint, but nothing visible. It got worse, such that the thumb hurt and with certain movements there were shooting pains radiating into the hand and up the arm. Went to my new PCP for the first time (my old one left and a new one took his place--this doc had been there before my time and left and then returned to replace mine, who I really liked ) He diagnosed it as deQuearvain's tendonitis, gave me some presc Naproxen, exercises, and told me to ice and wear a wrist/thumb brace esp at night. It improved with that over the following several weeks though I still have twinges with certain movements,nothing like before. But now the right one is a little sore....I'm being careful and exercising that trying to head it off. Now, for the last week or so I have had lowback pain esp towards the right side/right hip....again with no known trauma or overextertion That's improving with self-care and no trip to the doc. I was e-mailing with my sister in Co, and the one here who had the phyllodes and pneumothorax.....they both recently were found to be severely Vitamin D deficient and told me to get checked for that, and it apparently can cause joint pain So on top of my "usual" fatigue and the sore feet/ankles each day until I get "loose" I have been having a pity party. And getting depressed when I go the msg boards on Breastcancer.org and read of some women's side effects from the hormonal therapy I want to chalk some of this up to normal aging, but thinking having almost 2 more years to go onthe HT clinical trial is getting me down sometimes. And I need to schedule my annual physical with the PCP soon, and hope that he doesn't think I'm nuts for wanting the bone density scan every year (instead of every 2 which is what they "usually recommend, even when I tell them an aromitase inhibitor,which is likely what I'm on in the trial, can accelerate bone loss) and will probably have to beg for the Vit D to be checked too......unless the onc chekcs that in the every 6 months labs, I guess I should call there first and find out. OK, if you're still with me....thanks for reading my whiiine, please pass the cheese and crackers I feel better now!

Hey, we are all entitled to vent. That is all this is.

I think you are right to explore and question whether the pain you are having is normal aging or due to the meds.

I guess that is what the study is all about.

I think you should definitely bring it up.

Many of us tend to grin and bear it. However, you are your own best advocate, and given your sisters' recent discovery about the D deficiency, I think that bears scrutiny.

My reading indicates that calcium taken for stemming bone loss requires vitamin D to be absorbed. You can buy the type with both included in the same horse pill. However, if you are severely deficient, maybe you need even a larger proportion of D???

I agree that this bears looking in to. If something preventative can be addressed to avoid or significantly delay osterporosis, hurray!!

And if it is any consolation, I am astounded you are 51. If that is true you are the best preserved 51 yr old I have seen in a while.

Keep up the walking, it serves you well.

 

[NHAnn]

And if it is any consolation, I am astounded you are 51. If that is true you are the best preserved 51 yr old I have seen in a while.

Laurie, have I told you lately that I love you??!!

Did a little retail therapy at JCPenney today with DD and feeling much better. Disney therpay is better but I'll take what I can get

GAGWTA!

 

[MerryPoppins]

Welcome newbies. I love all the familiar faces, but I also like seeing some fresh ones around...if you know what I mean.

I'm doing well. Have a headache today, but I still get the blasted hormonal things. Why couldn't tamoxifen have made them go away like the doctor said it might?

I do have slight swelling of my left arm on occassion. I watch it very carefully and try not to do any heavy lifting. I'm mostly guilty on grocery shopping days so I try to plan to go when someone will be around to help me bring them in. Then I'm less likely to overload that arm. I'd say your mom should get it looked at asap. I think it can become a real chronic problem if she just lets it go.

I can't believe Thanksgiving is just around the corner. And no, the remodeling hasn't progressed. We're still at a standstill. Thankfully, we're not celebrating here. DH may be traveling Wednesday through Friday, so I doubt we'll get much done this week either.

We made a trip to Kansas to see our niece (actually a cousin's daughter, but close enough) in her high school musical this weekend. It was a whirlwind trip up and back...about 8 hours round trip. That didn't help DH's back at all.

GAGWTA. I'm thinking of you all.

 

[laurabelle]

~~~***GAGWTA sistas***~~~

What a magical trip! I think our favorite part was Friday afternoon, lying around SAB with a margarita...aaahhh! I can't recall if I told you all, I'm not allow to drink on this latest drug, it will kill my liver. But my dr. said once a year he'd allow it, so I took my 2008 day on Friday! The weather was wonderful. Had dinner Friday night at Flying Fish. Too beat to go back to the park after. We ended up going back in Epcot the next day too. Rode lots of rides with no wait. We went back to the room to check out and put our luggage in the car. A CM stopped us and asked if we were checking in. I think he was going to give us some pixie dust, but alas he was a day late. We made our own anyway! We had a nice full last day and our flight home was actually landed 30 min. early as they were rushing us through turbulence. I did manage to give myself my injection Sat. night. I set myself up in bed! I have zero pictures. My camera has been acting funny and even with new batteries it would not power up. But we have some wonderful memories we can carry around. Hubby was really glad we did it. I told him he didn't realize how much we needed it and when he's in a meeting today, just imagine laying at SAB...We can't wait to go back with the kids knowing we'll have some alone time then too.

Ann- I'm sorry to hear you are in pain. My blood work also shows that I am Vit D deficient, along with my high blood calcium and osteopenia. I actually see the Endocrinologist today. My other dr.s didn't start me on Vit. D because they want to see what the Endocrinologist says. I know it's hard not to focus on the bad things these drugs can do to us. Remind yourself of the research showing how much it is improving your survival rate. You are doing the very best you can Ann, taking care of yourself. Fortunately (or unfortunately) 2 yrs will fly by in the blink of an eye! I think you look fabulous too!

Elizabeth- I hope your mom calls today. I'm sure with everything else going on it was easier for her to put it off and not deal with it. I don't have much trouble with it myself but I have to be aware, it will let me know when I've over done things. They should recommend a therapist to help with drainage massage and fit her with a compression sleeve. I know there is a dedicated lymphodema website you can look at too.

Laurie- How did the phone call go with your sister?

Melissa- At least you didn't put pressure on yourself to host Thanksgiving. I hope you and hubby are feeling better soon. Sounds like you both need a break...I'm thinking all the GAGWTA sistas need couples only trips!

Seaspray- Glad you are finding ways to smile!

disneyholic family- Congrats to your mom! I loved what you wrote about her body rejuvenating...she is a survivor!!!
I'm Laura, dx stage II on 12/15/98 at age 36.

 

[disneyholic family]

GAGWTA!!

i don't know if anyone else here has hereditary cancer in the family, but if so, there is an annual conference that you might want to attend.....

i went to it for the first time this past May and am going again to the upcoming conference (in May 2009).
up to now, the conferences have been in Tampa since it's co-sponsored by the Moffet Cancer Center.

But the upcoming conference is going to be in Orlando - at the Buena Vista Palace (in WDW - hotel plaza).
It's a 2 day conference and has tons and tons of information.

I found it very informative and very uplifting. i think there were 400 people at it last year.
It's called the FORCE conference - their website is:
http://www.facingourrisk.org/

the conference website is
http://www.facingourrisk.org/annual_conference/index.html?PHPSESSID=592d0388dda20555ec0d0b356cc184d2

i didn't expect much from the conference when i went last year.
I basically went to be with my sister (who has heriditary cancer).
But it was really an amazing experience.

anyway, in case someone is interested.

 

[jackskellingtonsgirl]

GAGWTA, Ladies!

Merry - Mom admitted she has been lifting and carrying things she shouldn't, but now she doesn't want to treat the swelling. She wants to just leave it alone and see what it does. That's her mantra - "Leave it alone, see what it does."

Laura - Mom read online about the compression sleeves but I am pretty sure she has no intention of getting one. I will call her this afternoon and see how she is doing. Now I am even more concerned about her coming down to watch my sister's kids, because she will lift and carry them! If she won't get serious about the lymphedema I may have to call the onc and push for him to do something.

 

[jackskellingtonsgirl]

Ann - Glad you enjoyed your shopping trip!

Laura - Your trip sounds fabulous! I am so glad you were able to get away for the weekend!

disneyholic family - Welcome!

 

[snappy]

Ann, glad that shopping therapy is working for you. Our economy needs lots of good women like you!!!

Oh and, one of my fave expressions from Delswife (remember her and her wacky but lovable family on her trip reports on the Dis??), Love ya, mean it, to all of you!!!

I am finding planning for our '09 WDW trip is doing me a world of good. I just don't like that it is 6 months away.
DH asked DS20 over the weekend if he wanted to join us. He actually said yes. Now I have to go back to the drawing board, may need another room. He must have heard from DD18 how mom and dad treated her and her BF to tickets, lots of table service meals, etc. He may renege, he sorta did that this past year. We will see.

Merry did you have full node removal or sentinel? It sounds like you found a way to deal with it by bringing someone shopping. DH likes to go with me with I go to Sam's. If I am by myself, I have to rely on the kindness of strangers (ala Blanche Dubois) sometimes to lift the heavy items. Although at Sam's you can ask for assistance. I even had a Sam's employee with a disability help me one time. Everybody likes to help an old lady like me!!

Disneyholic family, I was on the facingourrisk.org site alot when I was trying to decide about reconstruction. It is a very good site. I have wondered how their annual conference is. Thanks for posting about your experience.

Laura, what a wonderful trip. If you are going to only have one drink a year, you sure picked the right spot for it. And you have a lot to look forward to bringing your girls next year. It sounds like you have no aftereffects from the fall? Doing the injection bed is a better plan, less porcelain to possibly knock your head on.

JSK, I sure am glad you are involved with your mom and her recovery. She will be even more limited if she ends up with full blown lymphedema. She really needs to see some pictures of women who are living with this. I had a brochure back in 2004, I will see if I can find it, although it is probably available on the internet. The pictures were enough to get me on board with being cautious.

I am SURE she should not be picking up any toddlers. Oh my goodness. Please call her doctor, I think your mom is in denial. I would also speak to your sister about this. I don't know if it will do any good, but I think your mom can enjoy her grand daughters without picking them for goodness sake. I would not even think of holdinga toddler. But in addition to the node surgery, my stomach muscle is compromised from my reconstruction. It would simply hurt to much. Now I did hold our niece Jennifer's baby when he was newborn. Not anymore. It is more fun to get down on the floor and play with him.

Cold for here. . . in the 30's this morning. We need to box up the Halloween decorations. At least the outside stuf is down. It was getting embarassing. I think the squirrels were laughing at us.

GAGWTA!!

 

[snappy]

~~~***GAGWTA sistas***~~~

Laurie- How did the phone call go with your sister?

It went as well as could be expected. She tried to make it easy on me and thanked me, etc.

Intellectually I think she had accepted the need for testing. Emotionally, no , she is not there. She did get the mammogram out of the way and will see the GYN in January. She will discuss it with her then.

She is just afraid. Afraid of cancer , afraid of being told she needs prophalactic surgery. She already is uninsurable due to a disability. So insurance consequences are not an issue. She has had to have a lot of surgeries in the last 10-12 years following a serious work related injury. The thought of any additional surgery is unnerving for her. She had a very bad experience while in the hospital after her last back surgery, akin to a panic attack accompanied with serious swelling. I was with her at the time, and it was nightmarishly scary. No similar subsequent incidents thank goodness but it really left a bad taste her mouth for any surgical interventions.

She ended up with a terrible case of hives on her head during the period when I was diagnosed and she had a BC scare in 2004. She does not deal with medical challenges very well, but she has had a lot to bear.

 

[jackskellingtonsgirl]

Laurie - My sister won't care what I say, because all that matters is that she can go shopping on Black Friday. That's how she is. That's why I don't speak to her. I will tell my youngest sister that Mom CAN NOT pick up the girls, but if she decides to show her own selfish streak and go off shopping, too, then Mom will be by herself with the girls from 3 AM or whatever asinine hour they all leave until somebody decides to take pity on her and come home.
My sister's MIL wouldn't watch the girls so my sister could visit after Mom's surgery, but she watched the kids last weekend so my sister could go to Mexico. See how this works? Yet Mom will knock her brains out to "compete" with the other grandmother.

I am sorry your sister is having such a difficult time! Lots of good wishes and hugs for her (and you!).

 

[jackskellingtonsgirl]

I just called and left a voice mail for the oncology nurse. Hopefully she will call me back so we can discuss things before Mom sees the Dr. on Thursday.

 

[snappy]

Laurie - My sister won't care what I say, because all that matters is that she can go shopping on Black Friday. That's how she is. That's why I don't speak to her. I will tell my youngest sister that Mom CAN NOT pick up the girls, but if she decides to show her own selfish streak and go off shopping, too, then Mom will be by herself with the girls from 3 AM or whatever asinine hour they all leave until somebody decides to take pity on her and come home.
My sister's MIL wouldn't watch the girls so my sister could visit after Mom's surgery, but she watched the kids last weekend so my sister could go to Mexico. See how this works? Yet Mom will knock her brains out to "compete" with the other grandmother.

I am sorry your sister is having such a difficult time! Lots of good wishes and hugs for her (and you!).

I was afraid anything you said would fall on deaf ears from how you have previously described her. It is just bad timing for your mom's Thanksgiving visit to be right after you have found out about the arm swelling. That is why I think your call to the nurse is a brilliant move. Good luck with this and keep us updated. Thank goodness you mom has you looking after her best interests. Hang in there you are doing the right thing, regardless if she thanks you, you have to know you are doing the right thing.

I'll be here to remind you less you forget

Mom is having her MOHS surgery on her squamous cell cancer today. My sister brought her, I need to head over now.

Thanks all. GAGWTA!!!

 

[jackskellingtonsgirl]

Laurie - I hope all goes well with your mom's procedure today!

Sometimes I get really tired of being the only responsible one.

 

[snappy]

I know I am blessed to have my sister and my brother who lives in New York. And it is great for her to be so close, her house is less than a mile away.

They have both been great.

I am still the go to daughter, partly because I am the oldest, partly becauseI got my act together first so to speak.

The MOHS surgery was amazing. Everything is done in the doctor's office. He is a dermatological surgeon. He has a brand spanking new office, looked start of the art. He was able to get clean margins on the first attempt. He did the path exam himself under the microscope, then came back in and stitched her up.

I think she will be in pain, but she has plenty of drugs. I am off to bring her dinner.

Thanks for asking.