Starting Chemo May 2008

sueper13

Lots of news for the lack of chattiness...can I just say a quick hello, prayers and good wishes  ( take your pick) to those who need them, ranD, check in please....rock, I sort of agree you  should just kiss him but I also recall that the tension is exquisite and part of the joy in the journey....so take your time and enjoy!  Just remember HE is the lucky one here--cause you're one of the greatest women ever, on the planet, in history. I am so proud of you Gracie for taking in daughter and children, you  are doing something no one else can do and it will never be forgotten. (Even if it goes over DD's head, WE will remember it and honor you for it)...Roxi, I will be thinking of you and if you want details of DIEP what to expect in the hospital, etc., PM me and I will answer you with probably too much information!

Any one else I missed, keep on walking and I'll check back soon--today's offering is a car trip from Cedar Key, FL to Tunnel Hill, GA--about 8 hours up I-75....we are so used to flying, we say, "Surface transportation is so slow......

Love all you guys!

Sue

ellenoire

Will catch up later. I have carried you all with me this week. Here is my blog post to explain.

http://noellesbloggybits.blogspot.com/2009/05/why-do-we-go-to-funerals.html

Love to all!

 xoN

lewing

Looking forward to the weekend and meeting Mary in Chicago!   Rest assured, pictures will be taken.

Linda

JulieC

Good evening ladies of May,

My oncologist appointment went well today.  The mammogram was okay and so was my blood work.  Now that it has been a year, I get to see onc every 4 months instead of 3.  I guess we take the little milestones whenever we can get them.  I'll have the next mammo in November and see the rad onc then.

Cris - the band concert was nice.  It was mostly a chorus concert.  The band only had 3 songs, but they were difficult.  These were the songs they played at the Six Flags competition.  They played Mars (from the Planets) by Gustav Holst and Intrada and Dance by Elliot Del Borgo.  The band director said she played the Mars song when she was in college so it was quite an accomplishment for a Middle School band to play it.  Even my MIL was impressed and that doesn't happen often.  She helped out with band and chorus when my BIL was in school so nothing can compare to what they did way back when.

Jackie - strawberries sound good.  They are our favorite fruit.  Riley uses the magic bullet to make smoothies.  How is everyone adjusting in your household?

RanD and Rock - soft hugs coming your way.  I'm so glad your friend posted for you on your blog, Rock.  I've been trying to figure out the time difference all day.

Noelle - what you wrote on your blog was beautiful and very moving. 

Big hugs to everyone - Julie

robink

 Dearest Sisters - It has been wonderful keeping up with your comments.  During my visit to Ohio and since returning home (Mother's Day) I've been reading daily.  Please forgive my silence and thank you for understanding.

There were many precious moments during the Ohio trip.  The two I will mention that were especially dear to my heart was getting to meet Sable and sitting in church with my mother Mother's Day morning prior to returning to Colorado.

I encourage each of you to act on any opportunity to meet one another!

Today I had a consultation with my plastic surgeon to discuss reconstruction. My hope was for a free TRAM flap.  No one does that procedure or the DIEP here in Colorado Springs. There is a pair of surgeons ~ 1 hour from here that does the DIEP however my PS reommended going to the Mayo clinic. Long story short, he recommeded a subcutaneous expander (my breast surgeon has left some extra skin) in preperation for which ever procedure I choose. The pedicle TRAM is the procedure he would perform for me here or gladly make the necessary phone calls to Mayo.

Noelle, I appreciate you sharing your recent blog posting with us. Your love, your pain, your hope radiated from your words. 

...Just prayed for all of you...

Love,

Robin

Jeano77

Hey all . . . another crazy spring week. 

Gracie - Despite some of the past challenges, it is awesome that your relationship allows her to call and you to respond.  I hope your all doing well.

So Kerry's surgery is the 28th, Roxi's surgery is the 29th, mine was just confirmed for June 1st.  Looks like May/June is "new knocker" month around here. 

Otter - I could barley look at the photo of the snake - I am soooooo incredibly afraid of snakes.  I cannot believe that you moved it!!  I would not move a garden snake - serious!

Chris -  Happy belated birthday!  Sorry, I have not spent much time on facebook lately being RFP season combined with nice weather.  I promise to be better about that.

Noelle - Your blog was beautiful and I am sorry that you lost your friend.

RanD - thinking and praying for you.  (((((((((hugs))))))))))

Anyone else getting a 1 year scan?  I had am MRI before my boipsy a year ago, onc is doing a PET scan May 29th.  Just wondering if that is the norm or not.

Love to all!

Jean

Jeano77

Robin -

I may be in Colorado running the Boulder Bolder 10k over Memorial weekend.  I am registered for the race, but waiting to see if I am cleared by the pulmonary doc to fly before surgery.  Last time I flew, I picked up the crud - cannot be sick prior to surgery or they will postpone it.  I am on the fence as to whether I will travel or not,  If I do, I will send you a note.  I have not looked at how far that is from you.

Jean

drcrisc

Carol/PurpleMe - Thank you for taking the time to write the post about your experience with chemo.  Fortunately for me, and all the others on this thread, we have also finished with chemo and some with rads, also.  We were a group that started last May - most of us finished by December of 2008.  No worries, though - we've been getting a lot of that this month.  It was very kind of you to post and I'm very glad to hear you came through fairly easily.  The best part is being DONE! 

drcrisc

Noelle - That was beautiful.

Rock - Really, really glad to hear things are okay!  Love ya...

Gracie - You are a gem.  I remembering doing a similar thing for my sister once (she was an adult but still needed "rescuing") so I know how hard it is to drop everything for a family member in need.  But that's what we do.

Speaking of sisters, she's visiting us this weekend with one of my nephews.  Time to hide all the play-doh!!

kerry_lamb

Wha-a-a-a-a-l! You get a bit of everything, reading on this site. Rock, I laughed out loud at the comment about the pics (snakes and rockets!!) and then had an acute little moment when you mentioned holding hands with your 'crush'..It actually caused a hot flush ROFL!! Then I read Noelle's blog and got weepy...we are all cut of the same cloth. Fuck this disease. Noelle, I thought that song was a good ole cattletick one..anyway, it's always been a favorite of mine (and a saving grace, on certain days. "Peace Prayer of St.Francis' is my top fave.  Jeano, new knockers it is!! And I thought THAT was an Australianism..I have a cold and a fecking tooth abscess..talk about TIMING! But I also have an excellent GP and he gave me some kick a$$ antibiotics today to take care of the tooth and the possible chest-infection. I tell you what, girls: time is passing even slower than it did during chemo. Now that I've made my decision I want these new knockers, and I want 'em NOW! Otter..thanks for the card. I cannot tell you all how special I feel when I get mail from you girls. It feels really nice.  Money is a PITA here, but we think Drew might sell his house this week..yeeha! Then the pressure (financially, anyway) will be just about OFF. It's cold, dark and windy as hell here..I guess that means it's gorgeous where you all are. I'm not envious..you are my best girls and you deserve a lovely spring. XXX

kerry_lamb

PS I'm thinking I can visit here regularly again so long as I don't read a single other thread..I'm going to try it, anyway. XX

Sable

Snakes, bug, new knockers, birthdays, concerts oh my! Seems like everyone is getting back into the swing of things nicely here lately.

I really have nothing new to report myself. I'm on effexor now for HF. This past week I went from 35mg to 75mg and have been exhausted all day and almost feel depressed. Not sure if it is not sleeping hardly at night or trying to get used to the drugs. I have 3 more weeks on them to see if they help any.

Robin~ can't wait to see you again in june if possible. I've been trying to look at the calender and see if there is a middle ground that all 4 of us can meet next time.

Kerry~ I stick with just this thread myself as well. :O)

Rock~Did ya smooch him yet????

KristyAnn

Hi Everyone,

Just checking in.... Kerry I had to quit reading other threads too- its not that I dont know the possibilities and statistics, I just HAVE to focus on the positive and getting myself well and back to more energy.

I picked micro greens, fresh spinach and little bits or broccoli and cauliflower from my garden this morning- so I have a really small salad for lunch today but I grew everything in it! Im excited!

Now I want fresh tomatoes to can my own salsa, marinara and stewed tomatoes again- I think I might try canning tomato soup this year if I find a good recipe.

Im jealous of lal the new knockers- I cant even begin the process until the end of the year if I get over my fear of more surgery by then! I gotta meet Sue first and check out her DIEP pair so I can decide what procedure to consider!

Kristy

otter

oooohhhh, Kristy, you're gonna get to look at Sue's knockers?  Ya think???

Yes, Kerry, if it's cold and windy there, it's hot and windy (and rainy) here.  I'm visiting in-laws in Oklahoma again. We just arrived this afternoon, about 6 hours ahead of the next set of severe, Oklahoma-style thunderstorms. Apparently, it has rained here (Tulsa area) for 20 consecutive days (or was it 21?). We'll send you warm hugs whenever you need them, though.

For those of you dealing with hot flashes... me, too.  I started on Arimidex last summer, and my flashes returned with a vengeance. They faded away during the fall and winter; but now that the weather is hot again, they're back. That was the case with my regular post-meno flashes, too--they were always more frequent in summer than during cooler weather.

I think it's amazing, how many of you are planning or scheduling recon surgeries almost exactly a year after starting chemo. I'll bet it feels like you are finally able to make things "right" again--or, at least the appearance of things.     I am sorry if that doesn't sound right--I don't know how to express what I'm thinking. I am very happy for you all. 

One thing I know is that I'm 99.99998% sure I will not be having recon.  I don't know--maybe if I needed to have a mast on the other side, too, I would feel differently.  Or, if recon surgeons were more willing to accommodate women who wanted small reconstructed breasts, I would be more interested.  Or, if I were younger, or still working, or not married, or ... Oh, heck.  I'm fine with my soft, puffy foob and my $9.00 KMart bra.

Noelle, I read your blog and I was touched. I have had a very hard time at some funerals, but others seemed just right and so appropriate.

rock, I haven't been back to your blog today, but it was great to read Jeannie's post that your "procedure" went okay.  The surgeon/gyn really lined it with gold?

Hugs to all of you...

otter 

familyroks

I wrote a long whole post on thoughts and erased it.  Sometimes that is all one needs.

Otter - I have pretty much decided not to do recon either.  Between 3 c-sections, not by choice, and the mastectomy...another surgery is not on my plan of fun things to do.  I keep thinking of the scars I have between my hips and shoulders.   I pondered it for a while but just recently decided that I can't do it.  I thought I was  strong, but I guess I'm a big wuss.  I will say that my DH is also not wanting me to go through that process.  It somehow helps that he just doesn't want me going through any more on my poor scarred body. 

Rock - You KNOW I'm right there with you.  Rest and relax.  Can we watch a movie?  Perhaps a comedy?  A little laughter is always good.

kerry_lamb

Kristy, I understand the fear. It was different last year..I would have done ANYTHING to beat the fecker cancer. But this choice thing is a bit scary! Even the thought of getting a canula!... ROFL!! after all the blood tests last year! Sigh. But it will be nice to have smaller ones, and a PAIR! The procedure I am having is NEVER discussed on these forums so I am looking forward to telling y'all about it when it happens. It must be very European..my surgeon does 2 or 3 a week. It's way less invasive and lengthy than the DIEPs and TRAMs etc. I couldn't have considered them..too chicken by far!  I just raked and mowed my yard and now it looks like someone lives here..and the big black cloud is about to break again. I HATE the cold..but I'm kinda liking the idea of being home for 4 weeks post-surgery. I'm planning to do ALL the mending, make some things and knit a couple of beanies. I won't be able to lift or dig etc...but that's ok..It's time I had a break from all that anyway! The orange terrorist is curled up with James on his bed and they both look so cute....life is cool. XXX

Sable

Otter Arienne~ I think I am with you guys on the recon. I keep going back and forth on it. Do I want to go thru the pain again? What about if they fail? Do I want to keep going back every 10 years for new ones even if they work correctly? I've had 7 surgeries now and I'm tired of being cut up. Either way I'm not deciding until I and thru with all my treatment.

70's and muggy here today. got to head out to buy hubby a pair of shoes for a wedding next weekend. I might slip me in a new pair of headphones while we are out. I could use a treat lol

sueper13

Yes, Krista can see my boobies.  I'm actually thinking of posting a pic on here--the moderators would probably delete it, but let's come up with a "when is a good time" for those who want to see them--Sunday morning?  Sunday night?  Let me know, someone keep score...we are waiting in the Chattanooga airport to fly back to DFW...then we will drive to Austin tomorrow to pick up the dogs, spend the night and be home for good on Monday.  My  own bed sounds good. Love to all of you and hugs to rock and ranD

ewesterman

Jenn --effexor now for HF --what does this mean?

Hi Ladies,

I am sitting for the third day in a row on the floor of a convention center in Spokane, Washington with some 1,000 teachers and other public school employees. It is our annual rep assembly -- delegate assembly...it is where people set the policy for us for the next year. We have spent three packed days debating, learning, listening and so on....it is almost over, It will be over early. I was catching up on the thread. It was nice to hear from Kerry. It was great to catch up on stories about snakes and rockets and kind deeds parents do for children. It was great to read Noelle's post on her blog and to listen to the to boob or not to boob discussion. I like it when I read that we are "done" with chemo even though herceptin is still considered chemo. It sure doesn't feel like it, but is is called simple chemo. I am readying for the final countdown on herceptin. I am hoping I have only five left then OUT WITH THAT PORT. My femarra still bugs me ... a lot, as it stops me from doing some very fun stuff...still -- two ibuprofen each morning with all of those fun vitamins seriously does take "the edge" off and, hey, as you know, none of this holds a candle to chemo. I could do femarra forever and it wouldn't come close to chemoworld.

Okay, on with it. I like checking on on you here. I like hearing about your lives on Facebook. I like post cards and love CDs. I am, as always, worrying about Randie even though I know she is home.

I think we ought to change are name from Starting Chemo May 2008 to, "May 2008 sisters." It's not that I want to forget we went through chemo together...it's that it's a chapter we can close.

Can you tell I am tired of sitting on a convention floor and have been doing it for hours and hours and hours? My babbling is worse than usual.

Karin, You would have loved this as we have the National Education Associaton Education Support Professional (ESP) of the year this year....she is awesome and we have the first recipient of the C.L.E.A.N award which is a custodian who believes in cleaning for the HEALTH of the children and staff at the school...he had to get off the shining of the floors and concentrate on teaching people how to clean not for looks but for health. He's amazing.

Inspiring words for you? It is a pleasure to be "cooped up" with a thousand educators on a sunny Saturday in Spokane. Teachers (and paraeducators and bus drivers and custodians and librarians and counselors and so on) are the best. Love you all.

Sable

Eddie~ they are trying me out on different types of meds to see if we can get a handle on the hotflashes (HF). I'm up to my 3rd med.... this one is effexor. it's another antidepressant... I'll be happy to find anything that helps out.

rock

quickie:  i'm not ignoring you guys.  me and my lumpectomied breast are just hanging out.

otter

(oh, man, I had to come back and edit this. I said I was chuckling at the image of rock's lumpectomied breast "hanging out" ... But, then I realized how crass and not-funny that would sound. Please be assured:  I'm not smiling at the image of a lumpectomied breast. Please don't think that. I thought rock was making a joke, but now I'm not so sure...  <sigh> ...)

[There.  I just typed a full page of ranting about how badly I would like my life to slow down, and how much I would like to be able to sit still long enough to watch some wildflower seeds sprout or have some muscadine cuttings take root, or build a birdhouse; but we're always traveling...  And then I erased it all, because it sounds so petty and selfish to be complaining about traveling to interesting places and visiting family instead of sitting at home under a shade tree and reading a cheap novel.  But that's it.]

I do love you all.  I think of all of you constantly.  Well, at least several times a day.  I worry about those of you who are dealing with rechecks and scans (as I will be later this summer and fall), and I worry about ranD's lungs and rock's cervix (trust me, though--you are more than just your body parts!), and I worry about whether all the recon surgeries will go smoothly and you'll be happy with the results.  I got dressed this morning (in a hurry, because I was last to get ready even though I was 10 minutes early), and realized I had left my foob out in the trailer, so I had to go back and get it.  Kind of funny--I used to have boobs attached to me on both sides, but now I have to keep track of one of them and remember where I've left it! 

Yesterday I was the official photographer for the birthday party for my 3-year-old granddaughter.  I could not keep up.  I missed the fancy, 3-layer, caterer-baked-and-decorated birthday cake, which was already de-candled and disassembled before I got a pic of it. I missed the "Dora the Explorer" pinata tied to a tree in the front yard because I didn't know the pinata-busting was going on as I was taking photos in the back yard. Dora had already lost her innards and there were a dozen children scrambling for candy in the grass by the time I got there.  I also managed to miss a photo of one of my granddaughter's 3-yr-old friends having an uninvited "sword fight" with my granddaughter, using a plastic bubble-wand to attack her until she screamed for her mother. Or, when the same 3-yr-old barricaded himself inside the nylon "castle" tent and hollered and screamed and kicked at any other child who tried to get into the tent with him.  (I was really, really glad when that kid went home early.)  It was very frustrating, and also very tiring for everyone except the 3-yr-olds, apparently.

But, breakfast at IHOP this morning was excellent. I recommend the Danish cream-stuffed crepes with the strawberry sauce.

otter 

Roxi65229

Yum, breakfast...yup, just spent it with Linda. Drove down to Chicago and had a lovely breakfast, thanks again Linda. I was jealous when she told me she had the pleasure of meeting Rock and hopefully meet Noelle later this summer. It sure is wonderful to meet someone for the first time and feel as though you've known them all your life. I just wish we would have had more time together. Linda had her camera and will post on FB later. My teenager took my camera out of the car so no pics for me (sounds like the soup nazi). 

I understand exactly what you all mean with recon and it wasn't really an easy decision for me. I struggled for a long time but feel this will put me one step closer to closure. And like Kerry, looking forward to four weeks off. As for scans, never had one and not sure if I'll get one. I do know that I'll be having MRI's instead of mammos once this port is out. My last two herceptins will be intravenously. 

Otter, your granddaughters party sounds like a hoot. I'm sure all your pictures will be cherished.

Love you all,

Mary 

Gracie713

Roxi--I am glad that you & Linda had a good visit!  Can't wait to see the pics. 

Rock--I am thinking about you!  .

Randie--Hope that you are feeling better and doing okay.  Think about you everyday.

Otter--My DH is the official photographer at the grans birthday parties.  I love watching all the little ones running and playing.  (Especially since I don't have to keep up with them-that's what their Mom's are for!)

Recon--right now, I have no desire to even think about it.  Being flat chested doesn't bother me at all.  (I was flat for the majority of my life.) DH is not thrilled about me having any more surgery.  Every now & then I will wear my foobs, still using the camisole as it is comfortable, going to wait another month or so before I get fitted with mast. bras & prosthesis.  Has anyone else had 'phantom' b@@b pain/discomfort?  I swear I can still feel them every now and then.  Difficult to describe.

Don't get to go back to work tomorrow after all--the district manager has to "approve" it and he has been on vacation.  So it is up to him if I get my job back or not.  Guess they haven't heard about the disability act.   If he decides not to let me go back to work, I will be contacting a lawyer and look for another job.  Hard part is that I was looking forward to going back and I really loved my job.  

Trying to stay sane here at home.  I miss my peace and quiet.  Two more weeks and Karli will be here too.  She isn't as hyper as Kelli.  And it will give Kelli someone to play with.  We have had to eliminate sugar from her diet--if I could bottle up her energy and sell it, I'd be a rich woman!  DD is actually helping around the house--keeps the dishes and laundry done. 

Ended up picking 24 gallons of strawberries.  Didn't bring that many home-I was just picking to be picking.  DH has been making strawberry jam.  It is so good.  I have cut up about 4 gallons so far.  Legs have been very sore the last 2 days, but it is a good sore.  Noelle--been using the muscle mist and it has helped.  

Hope that everyone is having a great weekend!

Love & hugs to all!!!

lewing

Just got back and am DAT after a long driving day - the highlight was having breakfast with Roxi.  Pix will be up on facebook tomorrow (probably not until tomorrow night), so stay tuned.  

 Going to bed. Goodnight, all. 

Linda 

Sable

OHHHHH I can't wait for the pics of linda and roxi!!!

Gracie~ I have also had those phantom boob feelings. I get funny looks when my "invisanipple" itches and I pretend to scratch where it itches.

5 more days till our drive to virginia... not sure if I am excited about going or dreading the long drive with a small child.

drcrisc

Kerry - Like several others, I also had to stop reading other threads.  Some of it was just a "time" thing; mostly it was overwhelming.  Not so much with just reading ours.

Eddie - Sounds like a good conference.  I like your idea of changing our name - been there, done that!  Also, maybe we won't be as confusing if we take out the "Starting" part.

Linda and Roxi - I will wait until tomorrow to check in with FB!!

Busy weekend here - my sister and 3 y.o. grand-nephew came up Friday and left yesterday afternoon.  He's a tornado, but in a good way!  And he looooooves Katie!  Sat next to her and just played and played with her hair - mostly she likes it, but sometimes she got a look of "HELP ME".  Priceless.

Gracie713

Jen--Invisanipple is a great way of describing it!!!!!! 

Sable

Just got home from my yearly girlie doc appt. Nothing like being told that your nether regions are as dry as the sahara... literally. Of course it is from the tamoxifin so no surprise. However my surprise this time around was that I now get to have a yearly internal ultrasound while I am on the tamox. Gee can we add just one or two more doc appts??? So this week alone I had pap today, tomorrow the internal ultra, wednesday I have a echo, thursday is herceptin and friday I am going out of town. whew! Doc was telling me about a cute bc shirt she saw in the paper this weekend... it was pink of course. it said... " yes these are fake, my real ones tried to kill me". I love snarky shirts lol.

sueper13

Well, we are finally HOME.  It's great to go, but it's great to come back.  We drove to North Georgia from Cedar Key on Thursday, flew from Georgia to Dallas on Saturday, then we drove to Austin Sunday and spent the night (our dogs were staying down there with my son and his wife, they have three dogs, it's like summer camp but for dogs..) drove home today and please, don't make me get back in the car for a while!!!!  Got home, brought in the stuff from the car, stripped the bed and am about to hang the covers on the line so the bed smells good later--life is good.  Got a message from my onc that they have scheduled me for a bone scan on the 28th, see the onc on June 4th.  Then, no dr. appts. until September!!!!

Love all of you, more  later, and pictures from Florida...

Love,

Sue

P.S. Otter, I believe you NEED to sit under a shade tree and read a novel.  Please try to make time to do that. Complaining about not being able to do that is not petty and selfish.  I start every morning with a book, 45 minutes, and a cup of coffee NO MATTER WHAT.  I got up at 4 a.m. for years just to have that time, so I totally get what you are saying!!