October 2014 Surgery Sisters

Akitagirl

Fourminor - I am very glad to hear you are going with another doc. That relationship is so vital to not only your treatment, but also your emotional and physical response! We need these folks to be our cheerleaders when we are down and our "gimme high five" when we have soared through a test or met a goal!

Hopeful - I am so happy to hear the "relief in your voice". That just makes my heart sing and I am thrilled you have been responding to your treatment and things are looking really strong for you! You are an amazing woman of faith and I so very much admire you. Your last sentence made me laugh, as we are also hosting Christmas (just like Thanksgiving), as we are the only ones on my side of the family who have our "you know what" together. Actually, we are very very blessed and I love to share our blessings with my small little family and give them a chance to just enjoy life and sit in front of a fire and not worry. Such a long story...but as you might guess, I come from a very low income, blue-collar family and I am the only one out of all my cousins and my one sibling who has actually done something with her life. That is not bragging, as I completely give all the glory to God for pulling me out of that cycle of destruction and giving me the courage and will to fight and achieve all for Him. Now, my family is a bit intimidated, and it was good that we were active duty Air Force and not around all that much. However, now that we are 'retired' and settled in Colorado, we are doing all we can to get my family to drive the 45 mins and come visit and understand that we don't think we are any better than them, and we love to share our love and wealth. All of this to say.....in a weird way, I am looking forward to Christmas this year. My next chemo treatment is the 26th, so I am very thankful to have this day of joy prior to undergoing another round.

During all of this time, I have really been pulled to open my eyes, have more compassion and empathy and realize that it is all in perspective. If anyone is interested, here are the lyrics to the song I wrote right after surgery:

Verse 1

As I look back through the years of my life,

I know it would make perfect words to a country song

You see my mama pulled away in her stuffy ole car

Without her little girl, holdin' out her arms,

She didn't see her son's tears soakin' up the ground

No, she never even thought to turn around (repeat)

Verse 2

Now my broken-hearted daddy drowned his pain at the bar

My brother bruised me from the punches he threw hard

Evicted from home, lost our broken-down car

Yet I covered my head, with my pillow in the night

And I prayed for God to show His light

Yes, I prayed for God to show me His light

Chorus 1

Why, why mama? Why mama...did you leave?

Why weren't we mama, worth your love?

Why, why mama? Why mama...did you leave?

Oh my mama, I still hurt so much for your love.

Verse 3

As the years passed away and I grew in God's love

He blessed me with a hero who swept me off my feet

Then amazingly He gave us two daughters full of love

Through my pain and loneliness, His love will defeat

Yes His sacrifice and grace set me free,

Yet there are times my heart still pleas...

Second Chorus

Why, why Papa, do you ask for forgiveness from me?

Oh my Papa, your death on the cross, has set me free

Why, why Papa, did you die just for me?

Oh my Papa, your love and your grace, sets us free

Yes, Your love and your grace....sets us free!

Hopeful82014

Those are such lovely, moving lyrics, Robyn. Many thanks for sharing both your story and your writing with us. That takes strength, which is apparently your middle name.

revup-65

Such strong women here!

Akitagirl  you have such a deep sense of who you are and what you believe, what you write obviously comes from that. Thanks for sharing beautiful words.

Fourminor

Bravo Akita, wish I could hear you sing it!

Hopeful82014

Ditto.

mefromcc

I had a scare to. I met my PS to go over my CT scan to see if I was a candidate for the DIEP. The first thing he said to me was that he had to check one of my breasts because the CT Scan showed a possible missed cancer spot. Fortunately it was just my boobette that keeps making fluid and the fluid was showing up as an area of possible inflammatory breast cancer.

Hopeful82014

Mefromcc - o.k. - that seriously calls for some dose-dense dark chocolate therapy. I'm glad it was just a scare, but what a scare it was!

Slavrich

This site has been pretty quiet-everyone must be busy getting ready for the holidays!!! I have so much going on at work and home this week-and I start radiation tomorrow or Wednesday. They call tomorrow a 'simulation'. I have my dept party at my house Wednesday-which is probably my first day of radiation. I have ordered all of the food from a local place-just have to finish cleaning up and placing the last of the decorations.

Has anyone had a sore spot on their TE? The top corner feels like it's rubbing and irritating me from the inside. Not sure this is good when I'm about to begin radiation, but I'll mention it tomorrow.

Hopeful82014

Slavrich, if you're doing simulation tomorrow it is unlikely you'll start radiation before next week. You can concentrate on your party instead.

mefromcc

Slavich

I followed your advice on making like a broken arm, and I sstopped accumulating fluid in my booblet. Thanks for the tip.

Today is nine weeks since my skin sparing BMX. I am back to normal activities. I even hosted our Ham radio club party last Saturday. I cooked turkey, pork roast, mashed potatoes and green beans. Told everyone what I was cooking and asked for a side dish. I had almost 30 people. We had a good time. Only glitch, instead of 70 degrees and sunny, so we could have the party on our outdoor patio, it was misty rain all day long, so it was inside. Worked out fine.

My treatment days are done for this year. I won't start again until February 2015.

sandra4611

Glad the "make like a T-rex" advice worked for you. When women ask what that means I say to mentally super glue their arms to their sides, from shoulder to elbow and remember, just because you CAN doesn't mean you should. There is absolutely no good to come out of trying to push it. Your body will have the last laugh...either fluid buildup or pain or both.

I haven't been here much because I'm in the middle of my pre-surgery cleaning. It's all the more frantic because of the holidays. My 6th surgery is Friday so everything has to be finished in order for me to be able to relax and recoup. There's still way too much to do, but at least the biggest projects are finished, cards got out two weeks ago and the gifts are wrapped. I'll do minimal decorating. Learned my lesson last year. I had my third surgery in December too and realized too late that all those decorations had to be put away. Not too easy to do with T-rex arms and no energy. My husband ended up doing most of it so when I open the boxes I dread seeing the mess he made.

Hopeful82014

Sandra - No, I wouldn't want to be opening those boxes, either, if my husband had put all the ornaments away! I hope it's not too dreadful a sight.

Good luck between now and Friday - and best on the day of.

Mefromcc - glad to hear you're up to normal and able to enjoy hosting your club. No ham served, though, to the Ham radio club?

I have a follow up scan this afternoon and will be glad once that's over and results are known. Assuming that's o.k., nothing more that I know of happens until early February.

I do have a divot and a scar from the repeat biopsy which, in my vanity, I'm not too happy about. The 1st biopsies left no mark once the bruises faded; this one is kind of a mess still. Maybe my surgeon will be able to fix it during the lumpectomy...

Akitagirl

Hopeful - will you remind your surgery sisters what your plan of action is? I know I have seen it posted somewhere... I just want to be able to pray for you specifically and be your cheerleader through all of this!

ME - That is so cool that you do Ham radio! I remember as a little girl, my grandma's neighbor was into that hobby and I loved to go over and listen to the cool conversations he would have. Very nice to know it is still around alive and kicking!

Slavrich - Sorry about your TE discomfort! Yesterday, I swear that I was having pain right under my left nipple...which was impossible, because there are no nerves there! So I am guessing it was 'phantom' pain. I took 5 mg of valium and that took care of it - you might try that to relax the muscles and allow the expander to adjust in position. Also, I have been doing circular massages with coconut oil to both of my breasts and it has really helped "loosen" things up. You might want to give that a try.

Christmas is right around the corner and during this Advent season, I am cataloguing all the blessings that we have, and I must say, this wonderful group of supportive friends is certainly one of them!

Merry Christmas, Happy Hanukkah and Happy New Years (and all other faith celebrations) to everyone! I hope we can all find some time to just sit and be thankful for family, health and life!

All my best,

Robyn

Hopeful82014

Robyn, I'm on neoadjuvant Femara. We did a one-month trial to check response and Ki-67 fell from 43% to 4%, so I'm continuing on it for a full six months. I have an extensive US exam scheduled for early Feb. to document size of the tumor and positive node, after which we'll set up my surgery date, targeting early/mid-April.

The initial goal with femara was to determine responsiveness, which was judged to be quite strong.

Now, we'll hopefully shrink the already smallish tumor and, most importantly, clear the node and avoid both ALND and chemo. Radiation will follow - maybe not as many weeks as initially suggested.

If we do ALND, she'll do ARM to minimize damage, but both of us hope that won't be needed.

Since I won't have any further path. results until April, I'm back in the morass of uncertainty and the unknown, which I will admit has become VERY wearing. It's a long haul without too many clear answers along the way, although knowing that I'm responding very well to Femara is a HUGE help. Since I'll probably take it for 5-10 years it's good to know that I'm responsive to it.

On another note, I had a follow up CT today to check the nodes in my lung that were found back in Sept. I should have the results before the end of the week and am hoping to cross that off my list of things hanging over my head.

I'm REALLY happy to be going this route instead of the conventional cut/poison/burn routine that I was probably facing. At the same time, my resilience is really challenged/worn down by the on-going uncertainties. Part of me just wants to get this over and done with. The other part of me is fine with just going along popping one pill each night and living live sort of as usual.

LauraW68

I had my 2nd round of chemo on Monday so just taking it easy now.

Akitagirl

Hopeful - you are so BRAVE and I want you to know that you could be paving the way for future BC warriors with the tactic you are taking. I know it must be extremely exhausting to forge a new path. It's kind of like hiking up a mountain, knowing where the peak is, but not following the well-worn trail. Instead, you see a path through some really beautiful areas that nobody has discovered and you are brave enough to pick up that hiking stick and head out on an adventure! Stay true to your path. I believe you have a much larger purpose in this and I also believe the results will be incredible. Keep your faith and your eyes pointed up.

With all my encouragement and a big hug,

R.

Sharpei

Sandra, good luck with this next surgery. Good luck!

We have slimmed down our holiday decor in recent years. Candles at the windows, a bit of color. Lots of music, concerts. Less wasteful spending. Simple gifts. Time together during these long, dark nights. I got so tired of bills, wrapping for hours, ungrateful children, and the loneliness of cleaning it all up. Maybe people were there to decorate, rarely so to take it all down.

Sharpei is morphing. I have decided she now feels like a suicide bomb strapped to my chest, a terrible image too common in our media (anyone watching Homeland?). But she has lost her dog like characteristics. PS says my skin looks good. Not shiny. Guess that would be because it was cooked with radiation ten years ago. I have had three fills on top of initial 300 at mastectomy. Four more to go. Second one this week on Friday, one next Monday, then a double fill at the end before we slip off to Naples, Fl. for the cold months. If the condo is ready. It will be close.

I barely feel the nurse inject the saline. Maybe a faint thunderbolt of pain. Very weird.

Then I have the feeling of a larger alien on my chest.

Doesn't it feel good to have energy return? I didn't realize it was gone until it came back. I still want very good nourishment, lots of rest, minimal crap in my life these days. I wish to enjoy each day gently. Less rushing, panic, anxiety. Plan, prepare, execute, enjoy. Productive work. Deserved rest

Many of you have much more complicated journeys than I do. Lots more uncertainty, bigger challenges.

I wish all fortitude, grace and hope, especially in this season of goodwill and love. Thank you, October Sisters, for sharing your stories, your challenges, your joys. I will still be around but life does get busier, especially once we outgrow our TRex arm phase.

Best wishes to all.

Sharpei

OceanSky

Slavrich, really interesting article about Tamoxifen. There is a time release form of Melatonin and another that isn't. Wondering which is better for this.

When was everyone told to start Tamoixfen...How long after their mastectomy? I have my script filled but am waiting til after the holiday to start.

Fourminor, Am sorry you're having those issues with chemo! Am confused...Did they do Oncotyping on you? What was your Oncotype score? I'm asking because I'm confused about the discussion about the need for chemo? Sounds like a nightmare what you're going through with it.

I have my brain MRI on Friday (looking for a brain tumor called a meningoma) and that's another reason I wanted to wait to start the Tamoxifen.

Florida is beautiful this time of the year. I spent 6 weeks recouping at our condo at the beach and it was wonderful. Being back home is a lot less relaxing! Glad I had that time though...It was a godsend.

Happy Holidays to all. Like many here am keeping it simple this year!

Fourminor

So I have a new MO and a new plan. Chemo is out the window. We are going to go with ovarian suppression and an aromatase inhibitor. Although the SOFT trials showed no added benefit to OS with Tamox in low risk women who did not do chemo, technically, with an oncotype score of 20, I am not low risk. However, after all the trouble i had, I now have three MO's who say no to chemo for me. Looks like after Christmas I will be hitting menopause ten years early.

Hopeful82014

Fourminor - That actually sounds like a pretty good plan, from my perspective. Not what you would have chosen for the year ahead (esp. early menopause) but a lot better than what you've experienced w/chemo.

If you find yourself responding well to the A/I it can be a very useful tool, as you probably realize already. Good luck with the adjustments your body will experience. I hope all of it works out very, very well for you. .

Hopeful82014

Robyn - I'm deeply touched and uplifted by your encouragement, which came at just the right time. You are one of the angels that's appeared along the path.

I do hope that others will have the opportunity to try this approach sooner or later. It is kind of wearing psychically but the long-term ramifications and benefits of knowing how I respond to endocrine therapy are so much greater than the (relatively) short-term strain that it's definitely worthwhile for me. If I can clear that node AND avoid ALND that will be huge, too. The biggest payoff is the possibility of an improved prognosis, which I think is the desired end point for all of us.

If anyone has any specific questions (or knows others who need the info) you're more than welcome to PM me.

Trails

Hi lovely ladies, I have a question for you all. I had the BMX in October, and my MO is recommending Tamoxifen as my follow-up therapy. I didn't need chemo or radiation - my Oncotype DX score was 12. There was no lymph node involvement with the cancer, but it was hormone receptive (on the slightly high side). I am still on the fence about Tamox for a few reasons. The numbers are as such: with 5 years of Tamox, I have an 8% risk of recurrence within 10 years. Without Tamox, the risk is 10-15%, according to my MO. I just turned 40 and have no children, but my partner and I have been discussing trying to get pregnant in the next 2 years - which, of course, is already pushing it age-wise. My fear is that taking Tamoxifen will push me into early menopause and that the chance will then be taken away from us (we are resistant to the idea of the egg preservation route). I also honestly don't know if the reduction in recurrence risk from 10-15 to 8% is worth the side effects of the medication.

So, with all that build-up, the actual question: would anyone else in my situation take the chance of NOT taking the Tamoxifen? I know that it's ultimately my decision of course, but I do very much value your opinions and perspectives. I'm trying to make an informed and rational choice, but I am so sick of all these crappy choices!

Thanks, and all the very best to all of you.

Hopeful82014

I agree with you, Trails, regarding the limited range, and generally dismal quality of the choices we're offered!

Have you talked with your MO about the question of pregnancy and tamoxifen? Is there a chance that you could try for a year or so and, hopefully, go through your pregnancy and then start tamoxifen?

Maybe a discussion with a fertility specialist or your GYN would be helpful?

I'd be hesitant to walk away from hormonal therapy altogether in your situation but there might be some value in postponing it, if the odds look good. It's definitely a tough decision to make, I'm sure.

Let us know what you decide - and good luck.

Fourminor

Trails,

I don't puport to be an expert in hormones, but I don't think pregnancy is not ideal for you right now. Pregnancy takes your estrogen levels through the roof, which is a lot different than just not taking Tamoxifen. I know how you feel however as I was first diagnosed as I was about to turn 41 and desperately wanted a child and had just at that point met my husband. I had no choice but to wait until two lumpectomies,radiation, and then for at least a clear mammogram at the one year point before i could try at age 42. Ironically, i was not put on Tamoxifen at that point for DCIS but things have already changed and now they would have given it to me. I did get pregnant right away and had my son at age 43 when it was all over without any problems and I counted myself very lucky at the time.

It sometimes occurs to me that that pregnancy may well have led to this cancer, as ILC grows pretty slowly and that was just four years ago. Still I would do it over again. But maybe you should at least do some Tamoxifen first to protect you. I would speak with your MO.

revup-65

Hello ladies, I have not been reading posts for the last couple days because I just feel overwhelmed. Surgery will be Jan 6 so I feel like I have been waiting for ever likeHopeful8201…  I got back my Breast MRI results, they were very interesting. I got my results in the mail, a day before the surgeon called and family doc to give me results. The breast with reoccurrence after 20 yrs has another small spot 6mm that they said was cancer, the good breast has an area of concern 6mm and they are recommending another core biopsy. I already decided for a double mastectomy so not going for the biopsy.  I am still waiting for the bone scan, that is a big one, could be a game changer for me.

What I wanted to share is 20 yrs ago I agonized over what treatment I should do. They gave me the choice of chemo,Tamoxifen  , I had a lump and rads. I did chemo and no Tamoxifen  . I went through the stats just like a lot of you have. I had to make peace with my decision, that was difficult but back then I worried about making it 5 yrs. I went through pain like a lot of you have, it got better as time passed and then completely went away. I lived after awhile not thinking everyday about cancer, and went on with my life. You are all special women, no matter what the stats say the human element is the kicker. To be honest the second time around is no easier and to be truthful treatments haven't changed that much so Hopeful8201 you are doing something special. My wish for all you great women is that you believe that you can be me with 20 yrs and beyond, and why not. I am not minimizing the fear or stress, it is a lot like going into a dark closet and closing the door, wait to see what happens but the light starts to come on and it gets lighter. If I could go 20 yrs and a friend of mine went 23 yrs with just lump and rads so can you. The wait is the hardest at the beginning, the pain is difficult to deal with, disappointments on out come are hard to tollorate. But these get better, having a place like this to be honest and vent or try to encourage sisters you care about, well what can I say, its like a life boat in heavy seas. Thanks for letting me hang on to the life boat with all of you.

Just one last thought, you are the only one that knows in your heart what is important for you, have children, reconstruction, walking a new trail of treatment for others to follow, so follow your heart that's what life is all about.

Hopeful82014

Revelle, I wish I could wrap my arms around you and share an embrace of thanks and solidarity and gratitude for your spirit and your presence in my life. Please let me know when you hear about the bone scan. You're in my heart and on my list. (And no, not the list that gets coal in their stocking.)

horsemom

Woke up this morning to daughter with a 102.5 fever. Doc thinks the flu. I'm 7 weeks out from BMX so feeling pretty good...until I did her chores with our horses and slipped on the ice in this wonderful michigan weather. Caught myself and don't think any damage, but my pecs are screaming. Surprisingly I feel a lot more soft spots on my chest now. Before TEs were hard all the time. I'm pretty sure nothing popped(no impact) but maybe I released some scar tissue?

Now the question is: pain pills or a couple glasses of wine!

Hopeful82014

Ouch!! Whether you go with the pain pills or the wine, I hope they're accompanied by putting your feet up in front of a nice, warm fireplace and some Friday night down time. Also hope your daughter recovers quickly and that YOU don't catch it!

sandra4611

Horsemom, hope you drank some wine. How's your daughter? Those high fevers are frightening. There's a nasty flu going around here in south central Texas as it's taking people a couple of weeks to get over it. Hopefully your daughter will use the benefit of youth to get rid of it soon.

I had surgery #6 yesterday and came home this afternoon. This was my final surgery. Woot!!! The PS did the final repairs on my jacked up left side - from the massive infection I had after my BMX. The area is criss crossed with scars from the front of my shoulder down past the left implant. The PS grafted in some fat for the deep indentations where I lost all the soft tissue and muscle. He removed the over sized mud flap which I swore looked like a mini-boob and wrapped around to my back. So attractive. But now gone with the wind. Yay! The PS did tumescent lipo on my upper abdomen, taking out nearly 1 liter of fat and grafting it into all the low lying areas on my chest. If I sit still and take Tylenol, I feel fine. If I move - yikes, my chest and abdomen start burning. It's normal I hear. I have a nice Velcro binder to wear from the foreseeable future and restrictions similar to post-BMX as far as lifting and not using my arms. Hopefully all or most of the grafted fat will find a blood supply and stay alive 'cause this is the LAST time I want to see an OR. 6 was plenty.

My husband was an inpatient in the same hospital, having been admitted on Wednesday because he collapsed in an elevator. He's been fighting hemolytic anemia from a brown recluse spider bite for 7 months but it took a major turn for the worse this week. The docs gave him two units of blood and then proceeded to remove half of that for blood tests. No diagnosis but weird test results so a hematologist was called in. Yesterday he had a bone marrow biopsy. Ouch! His pelvis is a little sore, but he said it wasn't bad at all. The doc is thinking he could have bone marrow cancer  because the spider bite venom shouldn't have done so much damage and been resistant to treatment. We won't know for a week because of the holidays. He came downstairs from his hospital room to be with me in recovery. A few hours later he was released, then came back today to get me. We are both sitting in our recliners with football on TV, a nice blanket and a fuzzy kitty. Our oldest daughter is on her way from Chicago, so we will soon have a Drill Sargent to make sure we take it easy. 

horsemom

Sandra4661

What a terrible ride you've been on. And your husbands illness on top of that! I can't imagine ... I'm praying that healing goes well, surgery is successful, hubby recovers, and you have a wonderful but mellow Christmas. (Or whatever event you celebrate at this time)

FYI- my daughters illness turned into the flu. It's nasty. I've been Clorox wiping, hand sanitizing, and keeping a distance. Lots of long distance "air" hugs. I've heard the flu shots this year are not catching as much as they should.