Starting Chemo Aug 09

gillyone

Hi Jenn - all done with high school soon!!! My younger son is almost 2 years out of high school and has been back at home this past year after an unsuccessful college year.(ie - too many Fs!!!!) He has taken classes this semester and we are hoping that it is better. Our older son will enter his 5th year in the fall - a senior for a while as he has changed his major three times. Oh well.

I am well. Had bad boob mammo - ok, then pap smear - ok. Hair is growing slowly, but I'm happy to have hair, even this weird kinky stuff.

I am busy at my preschool. We are coming to the end of the year and I am planning for next year. Anyone have any good tips for recruiting new families? As we only take 12 children at any time (all part time) with 2 teachers, we do not have a big network. I sometimes feel like we are the best kept secret in Moscow! It's a good job I like what I do - certainly don't do it for the money!!

YoYo44

Hi ladies,

Glad to see the good news.

Yay Weety, what a relief!  Glad you got good news.  And the waiting is over.

Lilah, glad to hear you are moving on too.  How exciting.

Juli, funny you say you feel like an experiemnt.  This is exactly how I feel sometimes.  Although I have gone more down the route of Mary Shelley.  I am thinking the end result is more like Frankenstein for me-hense the Franken-boob!  Heeheehee.  (oops sorry, more geek humour)

Patty, love your positive and optimistic attitude.  I just saw an arrticle in the paper that say we tend to immediately record bad things we worry about for fast and easy retrieval but good things take more processing before we record them  This was an article talking about the time we we spend worrying about things that never happen. This is actually some sort of survival mechanism for when we were trying to escape sabre tooth tigers or something. Enlightening.

I haven't written much as I have been getting pretty busy being back to work.  And this weekend was my son's birthday party.  It ended up relatively small with 6 friends joining towards the end.  We were at home playing street hockey and soccer outdoors in the glorious sunshine.  It was really fun.  This is what we are all fighinting so hard for.

But now it is back to work and back to normal for a while.  I have a question for you ladies, did any of you have joint pain after chemo.  I am waking up stiff and sore and my knees are killing me. Not sure if this is just 44 year old out of shape woman pain or post chemo pain.  I have never had this before so am thinking chemo.  And I am still waiting to start rads....

 Have a great day ladies!

Yo

Lilah

Yo -- good to hear from you!  Yeah I have had post-chemo joint pain (especially my knees!)  I saw my ONC about it last week and she said that some people get a post-chemo arthritis -- but the good news: it goes away (not a permanent condition).  Oh BC -- the joy that keeps on taking

jenn3

I was starting to think I was crazy - I have knee pain too. My arthritis meds work great for everything else, except the knee pain.  Strange.......  I think I'm still going to mention it to the onc because it's driving me crazy.

Yo - glad to hear from you and happy birthday to your son.

Lilah

I asked my ONC to give me a diuretic, because my hands feel tight (the way they used to feel the next morning after having had a sushi -- salty -- dinner).  I have been taking it for a few days and I think there is improvement both in my hands and in my knees.  Maybe I'm just crazy?  It seems harmless enough to try it (it's a pill that is a combo of two drugs, one that replenishes potassium and one that removes it... so it's a wash as far danger or SEs go).  My ONC told me to stop if I did not see improvement after a week... but like I said I feel there IS some improvement already (have been taking it since Thursday).

msmpatty

Weety - What a relief!  I am glad everything turned out okay.  I hope your recovery is fast and easy!

Lilah - May 11th isn't that far away.  I hope you are not too nervous.  I'm sure we'll "talk" before then...so I'll save my good wishes until later (although I'm thinking them now).

Gill -   This may be a dumb idea, but what if you put a little poster on all the Starbuck's bulletin boards in town?  I see lots of posters for tutoring and private schools on my Starbuck's bulletin board...usually with a little tear off with their phone or website on it. 

Everything is good with me.  3 months PFC, 1 month post radiation and I'm amazed at how much energy I have and how great I feel.   I've also noticed that since using all the lotions during and after radiation, my scar has almost totally disappeared.  Bonus!  Now I just need to schedule getting my port out.

Patty

Lilah

Patty -- I'm trying not to think about it at the moment   But yeah!  Two weeks til the exchange surgery.  I just said to my BF yesterday that even though I've already had 3 three surgeries this year (and this will be #4) it does not get less scary.  I hate the anesthesia... just from a fear perspective; although the alternative (no anesthesia) would certainly be worse.    On a lighter note, I'm so happy to hear YOU sounding so happy!  Woo hoo for you! 

weety

Lilah, I haven't even begun to think about reconstruction yet for a lot of different reasons, so I really don't know ANYTHING about it. I feel dumb even admitting this! Can you explain the basics of what you are doing, whaat is most common, etc so I know what's going on?  I know there are implants and expanders, that's about the extent of my knowledge!(lol) And I keep seeing people talking about going to NOLA for surgery.  What does that mean (I'm assuming it's NewOrleans, but what's the big hype about it?)  Maybe once I get the basics I'll be able to follow along when everyone else is talking about it all the time!

Lilah

Weety -- I had a uni MX (my right breast)... when they removed the breast it was skin-sparing (although I had a lot of skin so they took quite a bit too).  Whether or not you have skin-sparing is not a big issue; though if you have rads there ARE issues with implant reconstruction (so that other options may be better for you).

I had an immediate reconstruction which really means they start the reconstruction immediately but it takes months to be completed!  So my MX was December 9 and at that time a Tissue Expander was placed underneath the pectoral muscle.  Then, starting from a few weeks after the surgery until about the end of March, I went to get fills in my expander (aka TE)... which is a special sort of implant which has a port (it is under the skin but it's magnetic and they can find it easily with a special magnet) into which saline is placed via syringe.  As the small amounts of saline are added weekly or bi-weekly, the expander stretches the pectoral muscle until it reaches a good size.  It can be painful/uncomfortable but only for a day or so as the muscle relaxes into the stretch.  My PS overexpands and I want something large (hoping for a small D when all is said and done), so my fills took longer; some women only have to have a few!  My PS overfills so that when I have my permanent implant placed during the exchange surgery on May 11, that implant will be smaller than the current TE so my breast will droop a little (like my remaining healthy breast). 

Also on May 11, my healthy breast is going to be lifted and reduced in size (I was a DD prior to all of this and still am on one side   I can't wait to be even!  Anyway the implant itself is not really permanent either... they say they last about 10 years although many women have them for as long as 20 years... so my future will probably include replacing the implant at some point (later rather than sooner, I hope).  I chose to have this type of reconstruction because it was the least invasive (no scars elsewhere on my body).  That's the plus of implant reconstruction. 

NOLA is a plastic surgery clinic in New Orleans and they do a variety of surgeries really well, as far as I can tell, so that's the reason you keep seeing it.  They probably do implants but are most famous for doing the other types of reconstruction, which use tissue from your body to create a breast.  There are different kinds: TRAM uses the belly muscle (and if you don't have much of a belly you are not usually a candidate for this one); LD Flap uses muscle from your back (the latissimus dorsi muscle); GAP, I believe, used muscle from your butt.  There are variants within these categories and I'm leaving out the DIEP (which I forget what it is, sorry).  The bottom line with all of these alternatives is that your actual body tissue is used; so if, for example, you gain or lose weight the breast grows and shrinks with you.  With an implant that does not happen.  But I am a diabetic so I did not want to risk the more invasive surgery plus I did not want to miss work or be laid up (basically I wanted as little disruption of my life as possible -- or should I say: no MORE disruption!).  The potential risks of this type of surgery also were all higher for me as a diabetic.  For example the TRAM has a risk of developing a hernia (since the stomach muscle is literally moved away from the stomach).  I gave it a LOT of thought because I would have liked to do the natural way but in the end the risks seemed too great for me as well as the recovery time.  I decided to try an implant and so far I am not unhappy.  Even the TE looks pretty good!

Anyway NOLA isn't the only place you can get these sorts of surgeries; more and more plastic surgeons nationwide are able to do TRAMS, LD FLaps, GAP Flaps etc with great results... but I suspect that the numbers are just in NOLA's favor right now.  That said, my PS in New York (at Sloan Kettering) also does these sorts of surgeries... and when you are ready you can certainly begin by talking to a local PS.  Or PM Whippetmom and she can recommend a PS in your area (she keeps a list of Plastic Surgeons nationwide that women from here have had great experiencs with)!

I also would highly recommend that you buy a book called THE BREAST RECONSTRUCTION GUIDEBOOK by Kathy Steligo... which although it does not have every most current piece of info it has all the basics and is a good place to start reading about the different options. 

If you decide you are interested in the implant route... I highly recommend that you check out the thread on this site called BREAST IMPLANTS 101, which Whippeetmom started for women who are having implants (she has a weatlh of knowldge).  I also recommend the Exchange City thread.  Lots of women on the EC thread (which is massive) and most there have gone the implant route.

YoYo44

Hi Ladies,

Thanks for the info.  I also have the hand swelling (worse today) and I was trying to rationalise that it is not lymphedema.  I used to get this occasionally but I was wondering about some sort of rheumatism/arthritis after chemo, possibly immune response. Or then again nerve damage after surgery.  It seems there are so many possibilities.

LOL Lilah at you comment: "Oh BC -- the joy that keeps on taking."  That is exactly how it feels some days.  Oh well, it could be worse.  Take care all!

Yo

gillyone

Patty - thanks. No idea is dumb. One of my young teachers and a young parent suggested I get my preschool on facebook. So I am doing that - all so weird. As you can tell, that is not something I normally do.

Lilah - what a lot of information. Very interesting. As I had a lumpectomy, reconstruction was not something I had to consider. I sometimes wonder how we decide whether to go with lumpectomy or mx. It does not necessarily seem to be related to stage - just look at mine. For me, when the surgeon recommended lumpectomy  and said this plus rads would give me the result as mx, then that's what I did. Of course at that point he was thinking I was going to be stage 1 or 11 and chemo was not even in the mix until we got the pathology after surgery. Gosh, just rambling.

weety

Thanks so much Lilah!  Now I don' t feel so dumb anymore! I am going to check those sites out.  I'm reeeealllly small breasted--I like to say "almost an A", but probably realistically, it's an AA.  And of course, the one boob that probably was "almost an A" is the one that got lopped off.  I'm left with the smaller one. LOL.  I'm very thin and now after the mastectomy, it seems that the skin just barely covers the bone.  No padding or fat there.  I don't even know if they could do any kind of reconstruction on me!  And yes, I had rads there, too.  SIGH. . .  I hate breast cancer and what it has done to me. . .And now with my hyserectomy/oopherectomy finished, I'm officially an "IT" well, maybe an "it and a half" since I do have one boob (if you want to call it that)!  OOOOOhHHH so depressing.

gillyone, My dad is pretty involved with my church, and a few months ago he was asking me about pics of my kids from when they were at the church's preschool.  He told me that in a survey they gave the parents, almost half of them had found the church's preschool on an internet search!  So the preschool decided to invest some more time & money into the website to see if it would work in recruiting more families.  I don't know if it worked or not--this just happened in the fall/early winter.  THey might not see much in results until the new school year.  I think the website idea is GREAT!  Just be careful to get waivers signed by the parents if there kids are in any of the pictures.  I'm not sure where you live, but I think that's a big thing here in southern california.  I teach Kindergarten and have to get waivers signed for all our pictures that go beyond the classroom.

Lilah

Gilly -- well I did try to have lumpectomy; after the first one they realized I had IDC (not DCIS, which was the original diagnosis) and after the second, when there was still one close margin, I just did chemo and decided to deal with the next surgery step later.  I also had to change BS at that point because the second lumpectomy had removed a lot of tissue and I was going to need some sort of plastic surgery and the BS I had been using worked with a PS who was not in my plan.  So I switched BS and the new BS (as well as PS) thought I really needed an MX to get a better cosmetic result as well as to be sure about getting rid of the cancer.  I'm not sorry I did it now but I have to say it was really hard changing the plan and had my doctors recommended just one more lumpectomy I would have been fine with that!

Weety -- if you are curious you should really talk to a PS and see what he/she recommends.  You can decide to do nothing but I think you would find such a consultation informative.  Hell, talk to two!  You CAN do a small TE and implant... no requirement that the implant be large!  But there ARE issues for radiated skin... not everyone who has had radiation has them, though, so again you would need to talk to a good PS.  One bit of advice I will share: make sure that you see a PS who specializes in breast reconstruction following MX.  The kind of PS who specializes in breast augmentation is NOT what you want; it's a different skill set.

Yoyo -- hang in there!  I have met so many women who have survived and gone to resume normal lives.  We just have to perservere!

Karen09

Hey ladies!  I am back from the Dominican.  What a wonderful trip!!!  I went with two girlfriends and we laughed and laughed.  I haven't laughed like that since I was in high school and it was great.  It couldn't have been more fun and the weather was terrific.  I miss the ocean and the sunshine for sure.  I really want to go back again sometime.

Weety - I'm so relieved for you!!!  What wonderful news!!!!    Congrats!

gillyone

Thanks weety. (I am in Idaho - a small college town).

Karen - good to see you posting and after a great trip. What fun. We deserve it.

jenn3

Good afternoon - looks like it's been busy. 

Yesterday was my DD last day of high school, she is now going to be a college freshman.  I can't believe it my "baby" is finished high school.  Today we are headed out for a short road trip to take my daughter to see the college she decided on.  Because of BC I never did get a chance to take her to look at colleges, she made the decision based on online reviews, word of mouth, talking to her school counselor and scholarship offers.  She has a full scholarship, plus additional funds to cover living expenses.  I am so proud of her!

I see that y'all were talking about recon.  I visited with a PS a few weeks ago, it seems that I am not a good candidate for implants because of the radiation.  I am qualified for DIEP, however, because of an appendectomy I had over 20 years ago (before laparoscopic surgery) they will have to do some test to make sure the veins weren't damaged.  The PS I visited was trained by one of the partners at the NOLA clinic that is mentioned on these boards, but I still want more than one opinion, so I'm going to schedule an appt with them too.

Karen - so glad you had a wonderful time - much deserved!!!

Lilah - you seem to have a lot of information on recon - after my next visit to the PS, I think I'm going to talk to you to make sure I understand everything.

Yo - so glad to hear from you - how is the arm?  getting better yet?

Gill - what about church bulletins or elementary school news letters? 

Lilah

Jenn -- congrats on DD's graduation!  woo hooo!!!  And yes of course I will do what I can to help... I know some (not all) but have spent months obsessively researching   Still, with my exchange and lift/reduction (for healthy boob) coming up in less than two weeks all I am is a mass of worry and nerves and certainty that I will hate the results!  Mainly obsessing because unlike a lot of the women on this site who go for larger (or the same size) breasts... mine will be smaller (because they were always too big)... so now oh the worry!

gillyone

gillyone

My hair!!!

weety

Looking good Gilly!

Lilah

So thick!  And such a pretty smile

jenn3

Gill - you look beautiful - the hair looks great! 

Liliah - Wow - just looking at the calendar and your surgery date is coming up.  You must be excited and a bundle of nerves all mixed together I'm sure.

Weety - how have you been feeling?

We drove up Thurs night to my DD's future college, I was very impressed with the campus. Of course we spent a fortune in the bookstore and will spend more next month when we go up for orientation. Then after we left there we decided to continue the road trip and ended up in Memphis, TN.  Because they had a huge music festival going on we couldn't find a hotel anywhere in town and ended up at...............get this........the Heartbreak Hotel.  It's across the street from Graceland, so we toured Graceland earlier today before heading home.  The night before we drove into downtown and decided to get mixed up in the crowds for the festival, which was fun and ate at Rendevous - famous for their BBQ'd ribs. The trip was spontaneous and fun. 

Hope everyone is having a good weekend.

Lilah

Wow Jenn what a fun trip!  Your daughter starts college in June???  How unusual!

Yep I am a bundle of nerves and doubts and worries: am I choosing the right kind of implant, will I be happy with the size?  Will it hurt a lot after? Etc, etc.  I expect it's all normal but man I can't wait til I am done! 

msmpatty

Lilah - I feel for you girl!    I'm getting ready to schedule my de-porting and although it is pretty much a no-brainer, I've been delaying it because my surgeon does it in surgery...ugh.   So, with all you are facing I completely understand your fears.  There is something about surgery that is just really unsettling and add to that all the unknowns you mention...oh boy.  My bet is that with your great attitude you'll get through just fine and love the results...two matching perky breasts!

Gil - Love the pix!  You look great!   I also totally endorse the suggestion that you get your business on Facebook. It's a great way to reach the young parents you need.    I don't "get" Facebook at all, so when we put our business on it we found a young, hip, internet-savvy guy to do it and maintain it for us.

Jenn - Your trip sounds fun and congrats to your daughter.   With my son only in 8th grade college seems a long way a way, but I know it will be here before I know it.

Patty 

jenn3

Lilah - we have orientation in June, but she will start sometime in August.   Which is really going to be rough because I've committed to a big project at work that I think will bump up right against her starting college - ugh!!!  But.......I'm not going to worry about it now, we'll deal with it later.

Patty - I just can't believe my "baby" is starting college this fall, she is my youngest and I'm just not ready.   Time flies..............  Getting the port out was weird for me emotionally.  I wasn't ready for it to go, but at the same time it was one step closer to being done. 

Lilah

I can imagine that getting the port out can be scary... but man I can't wait to get mine out (but have to wait til September   It pretty much always hurts me... I think it must have gotten put in on or near or nerve.  Sigh.

YoYo44

Hi Everyone,

Jenn, congrats to you and the DD.  You must be so proud.  Sounds like a great road trip.  Those are always the best memories. And good luck with all the PS's.

Lilah, good luck on the impending exhange.  I am sure it will work out great.  Have faith, at this point that is all that is left after all the research and decisions.  And oh, you can remind me of this in the fall when I do mine-I am sure I will be in an even worse state of anxiety!!  :-)

Gilly, your hair and you look great.  I am jeolous-I am still just a fuzz head!!  :-)

Karen, what a great message.  I can just imagine the good time you had.  I am sure it did you a world of good and was a well deserved trip.

Weety, think of yourself more for what you have gained than what you have lost.  You are not the sum of your parts and I bet you have grown immensely from this experience.  I certainly appreciate life and my family and friends more now.  Some days are tough and we have to make choices others don't but we also tend to know that our family and friends love us whereas other take that for granted.

As for me, my joints are still sore although perhaps not as bad.  By the end of the day I really feel decrepit.  I am sure it will go away after time and I am treating it as temporary.  You know what else is funny, I am now clumsy.  I have always teaased my friends about this and now I am the biggest clutz!  (and cannot type either!) I am sure it is related. But the good thing is that my eyebrows and eyelashes are coming back and the fuz on my head is starting to have a slight tint.  But still no word about radiation.  I was told I would hear this week.  Oh well.

 Have a great day ladies!

Yo

gillyone

Thanks to all for the kind comments on my hair.

Patty - I meet with the oncologist next week and one of the things to discuss is de-porting - and I am 6 months PFC!! Like Jenn, I'm not really sure I'm ready to let go. It's like a talisman - as long as I have it I won't need it. Stupid, but there is nothing rational about bc.

Lilah - what do you teach?

Lilah

Gilly -- I teach writing at a university. 

YoYo -- thanks for the words of support!  I'll definitely be here to return the favor in the fall

So I went and got a hair cut on Friday!  Just a buzz cut really.  The hair was getting scraggly around the edges, especially on the sides around my ears and on the back of my neck.  I then celebrated this by going out to dinner that night without my wig (kinda freaky) and then the next day my BF and I went to a local casino for the day (more fun being topless!)... now I'm really starting to look forward to ditching the wig.  I will keep wearing it to teach through mid-May (it's way too short still and I'm not up for the exclamations)... then since I'll be at home for the rest of the summer... I'm hoping to wear it less and less.

buccaneersdj

Gilly NICE HAIR!!! I am jealous mine isn't nearly as thick on top as yours, but good enough to go topless at least.

Had my first mammo (just the bad boob) last month and all was clear. So this week I have my regular annual mammo on both boobs (digital this time) my oncologist told my insurance company that I am "required" to get a digital mammo from now on, they wouldn't cover it before! Smile!

I'm sorry I have been missing from the boards but still read post everyday and hope everyone is feeling better! {{{HUGS}}} Donna