2012 sisters

websister

MrsCich - the appointment with the MO doesn't necessarily mean they will recommend chemo, they may discuss with you what percentage your chance of recurrence may be without and with, may suggest oncotype due to your stage and no node involvement. I believe (here in my city, anyway) that the oncologist is also responsible for hormone therapy so may discuss taking something like Tamoxifen with you. Good luck with your fill tomorrow.



Liefie - hope all went well with your ob/gyn - sounds like you have a good one



Jpmomof3 - good call on your daughters room, it's a beautiful day here also.

MrsCich

Web sister, Im currently waiting on the Oncotype score. My BS said it takes a few weeks. He is also the one that told me not to get my hopes up about not having to do chemo. He said because of my age and the aggressiveness of cancers at my age, chemo is almost always recommended by my Onco.

liefie

Ob/gyn says everything is hunky dory - yay! I like him a lot as most of his other patients do. I celebrated with a sea salt caramel ice-cream on the way back - a child size, okay? Yes, jpmomof3, I was diagnosed with both endometrial and breast ca, as well as gallstones (!) on Dec. 19 last year - what a lousy Christmas. First had a hysterectomy plus colosystectomy ten days after diagnosis, then UMX with TE five weeks later. In follow-up I have to see the ob/gyn every 4 months till Dec, 2013, after that every six months till 2019. Seems to be a lot of check-ups, but rather too diligent than not, I guess. Can never be too careful with the stalking beast. Only thing that puzzles me though is that he told me today that if the uterine ca comes back, it will come back to where my uterus used to be. Really? Oh, okay! And here I thought there is now just a black vacuum where everything was taken out. . . . LOL.

Anonymous

Been keeping up with posts throughout my resting from round two. Liefie - glad to hear the good news! What a journey you have been on! I won't pretend to be able to respond to all. Just wanted to pop in and say that round 2 has been much more manageable than round 1 was. Think i learned a lot from that first round and was a bit smarter this time around. Also discovered ginger gum today. Not tasty, but useful for sure. Been trying out a variety of head covers today for my newly shaved head (which is so cold when left uncovered!) and trying to get the hang of various tying and wrapping techniques. My aunt bought me some beautiful silk scarves while in China recently, and I think i'm really going to enjoy them. They seem luxurious and beautiful. Will be glad to go to my LGFB class next week - where I assume they help you with these kinds of things? I promise I'll take a pic soon and change my avatar (and stop hiding behind my little guys . Here's to hoping for minimal SEs to those in treatment, and a restful night to all others. Hugs to all!

MirandaSW

I am so glad to have found this site. I am learning so much from reading your stories. My dmx is next Wed. Im getting a bit anxious. I feel like I have so much to do. I had a month to do all this stuff, and now it has dwindled to a week. I still have so much to do and not enough time...

I was wondering...I know you have all been here, and are used to it...but I have a hard time keeping everything straight as this is one thread that has every topic discussed on it. Would anyone be interested in another forum where it could just be us (or any other 2012 sister) but since the whole forum is ours, we could separate topics?

jpmomof3

Liefie, so glad to hear you got a clear report from the gynecologist!



Ramols, the headscarves are pretty nice in a way. They add a lot of color. I ended up wearing some from headcovers.com that had a matching scrunchie. Made it easy to put on and kind of reminded me of long colorful hair the way I could drape it.

mcook301

Hi



I have starting about three post in the last few days but kept deleting them! I am at such a cross road here on making a choice on rads and at a stand still and almost ignoring it. I don't want to do them but I am scared I am making the wrong choice. Every inch of my body and mind says I will make the best decision I can. Doctors recommended it but also were a bit vague about it because of my response to chemo. Wish someone would just say, yes you have to do them to live or no your odds don't change but they won't they say it is an odd case and not a lot of stats. Fuck I don't know what decision to make.



I am off work for last two weeks and thought I would be motivated to do some thing but I just run around in circles. I kind of feel like my doctors are not giving me much attention anymore as they did during chemo. I am going to call my OC tomorrow to discuss more.



I want to address everyone on here tonight but my back is a little stiff to sit in this position much longer and type so know I am thinking of all of you! Hugs!

Soyaandpepper

jpmonof3-Good to know you're doing well on your rads, and yayyyyyy for started running again! Doesn't it feel the greatest when you started doing what you used to do again? And yes you sound like you have cording, I had it after my surgery and still do but very little now and my range of motion is 100% but the cording is still there slightly there when I stretch up my arms. My doctor showed my DH how to massage my underarms 3 times a day and it really free up the cording.

Ramols-Great news about round 2 and hope you have less SEs from now on.

mcook301-I know exactly how you feel, I wish my doctors could tell me that I absolutely need chemo or rad or other treatments so that I don't have to worry about it and decide for myself. BUt that's not to be and you would know what's best for you. Take a little time to do some research and look deep inside yourself when all the stats getting too much for you. The right answer will come to you at a moment of clarity. 

Cindyl

mccook- Yes.  I really wanted my doctors to tell me what to do too.  Where is Dr. Welby when you need him?  I can't tell you what to do, but I can tell you that looking back at rads, they were more of a nuisance than anything else.  Yes I was tired.  And yes I had a terrible time with skin breakdown, but I got through it and only missed work for the daily 30 minutes it took to drive to the clinic, undress, get zapped, dress and drive back.  Oh, and one afternoon towards the end of the process when I just couldn't wear a bra.  Unfortunately no one can say if you really, really need the extra protection that rads will give, no one can say you don't. No one knows if you will have long term damage either.  I guess, I was more afraid of a reocurrance than I was of rads, but whatever you decide, will be the right choice for you. 

tina_jason

jpmom- Glad you were finally able to start rads.  I'm right behind you.  I got the OK to start on 9/17 and I will also be doing 33 treatments.  If I stay on schedule my last tx will be on Halloween!  I have been doing a lot of walking and tried a little bit of running.  For some reason I am so worried about my port.  I would like to do a Turkey Trot so I started training this week for that but I don't actually begin running until next week.

bev- I've been wondering how your healing is going and please forgive me if I missed a post.  When I don't get on for a few days I try to catch up but I know I miss some things.

ramols- Although I did wear a wig to work I wore hats and scarves when I wasn't at work.  My BFF had a scarf shower for me (my DH's idea) and I got scarves and hats in every color.  I love accessorizing with them and matching them to outfits.  I also enjoyed trying to figure out new ways to wear them since they come in different sizes and lengths.  Now that my hair is back I'm enjoying wearing them as scarves again.

I did mapping (again!) this morning for radiation and it looks like this time I really get to start rads! It seems crazy to be excited about tx but this is another step toward total healing and I want to move on with life.

bevg49

tina, thank you for asking. The healing is going. Actually, I see the surgeon on Friday but don't think I'll need the vac. They said it would heal from inside out and I never knew what the heck that meant but actually I now see what I guess would be called hard tissue growing from left to right under the skin where there was a void I suppose you'd call it so that now I have a deep opening just in the middle, a lot smaller than it was. Almost no blood or any other fluid. I still wash and put bacitracin but don't pack every day anymore because there is not much space to pack and nothing comes out on the gauze. My worry is more the actually skin scar. How will those two pieces of skin become one. I would think I'll need stitches again. He had said it will all heal. The skin is still in two pieces so we'll see. I'm glad I'm seeing him Friday. He had said come back in a month which was too long in itself but then the receptionist made the appt. for 5 weeks, wayyy too long for what's going on with this. I had my MX on JUNE 7....It is now Sept. 13... A long time... I am glad I'm seeing him Friday to find out what he thinks about the progress or lack of....

Scorchy

Bev,

I haven't gone through all of the old threads to know your complete story, but this sounds like it was quite an ordeal.  Seems like your body is coming together (no puns intended).  Good luck on Friday!

Scorch

juneaubugg

Ladies, I finally caught up reading the past two days. I was taken out by pure exhaustion and stomach pains (that would be from my Crohns disease).



Mcook; I went through the same thing with "recommendations". Many of us do. My journey to a decision was PAINSTAKING (as a few of you recently reminded me - which I needed to hear btw do thanks!). BUT eventully I got to the right place for ME. Hang in there.



Who made the turrets comment that accompanies this dx.... HaHa. I guess being from New Jersey I've always held onto a small case of it! And I wave it proudly (in appropriate company and circumstances...of course). ;-)



So I'm off to my first Cancer Community Weekly Support group this morning, followed by PT for my cording; and then I see a nap in my future.

Hope everyone finds their piece of happy today ... Eh Ramols? :-)

Anonymous

Tha's the spirit, Juneau! I think my happy today, is accessorizing with scarves. More enjoyable than I thought it would be! And at the risk of TMI, I succeeded in beating constipation for round 2. Woo hoo! Hope the rest of you get your happy today!!! Hugs to all!

websister

Liefie - good news, you really had a rough go there last December. Interesting re: uterine cancer returning where uterus used to be, maybe similar to BC returning to the mastectomy scar?



Ramols - glad to hear you are managing better this time. My LGFB class did have a little on scarf tying, there are also some good videos on YouTube. Like jpmomof3 I have liked the Headcovers scarves that have their own scrunchie, I also bought a package of multi-colored hair 'elastics' and find they hold better than tying. Enjoy, looking forward to the new avatar.



Mccook - hugs



Tinajason - glad to hear you are a go for radiation on the 17th



Bev - it's been a long haul but good to hear that things are 'coming together'



mirandaSW - welcome



Juneaubug - I'm thinking this must be a better week and you are getting out and enjoying the time before next chemo?



Physio today, fitting for mastectomy prosthesis tomorrow, will use until reconstruction is a possibility



Take care all

allurbaddayswillend

A Toast to Liefie for a good checkup! Cheers! :::clinks tea cup to everybody else's cup, goblet, what-have-you:::  I will also have some frogurt to celebrate my sisters' other successes!...

ramols, I would take little bites of Ginger Chews candy during those first few days after AC. I also bought Reed's ginger ale which is pretty strong ginger content. I'd put it on a LOT of ice and sip it, I maybe went through a bottle every day and a half at most, that's how strong it is. I have some on hand still but so far (knock on wood) the Taxol isn't giving me queasies.

I've become more of a hat person. I have a colorful costume wig I enjoy wearing but not all the time. I sometimes wear a bandana or scarf but I like the ease of just throwing on a hat and then one of my nice scarves around my neck. I got one of these:
http://www.hatsscarvesandmore.com/c-womens-hats-p-A-linen-blend-military-hat.html

and one of these for winter:
http://www.amazon.com/Isis-Womens-Northern-Lights-Forest/dp/B0058CB8AG/ref=sr_1_fkmr1_1?ie=UTF8&qid=1347548376&sr=8-1-fkmr1&keywords=boiled+wool+cap+isis

Tazzy

MrsCich - hoping the fill goes well for you.

Liefie...really - you've been through so much - enough already.

Ramols - glad you are enjoying the scarves. Like others here I eventually had so much fun matching scarves and hats to outfits and and all the different ways to tie them. Some great sites on U-tube for how to tie scarves.

Mcook: what a crappy decision to have to make. But you will find one that you come to and be at peace with. For me I am quite happy when they told me about the treatments they advised. If I didn't have chemo/surgery/rads the alternative would be die. So no brainer for me. Whatever you decide we'll be here to support you through it.

Bev: good luck for Friday.

Welcome to Miranda.

I was at the BRAG workshop again yesterday. PT showed us some self-massaging to move the lymphatic fluid around - can be done sitting watching the tv. Then I went and got myself a foobie.... Will be so nice to go out ‘level' on both sides now.

Hello to everyone else I missed out. Hope you can all manage to have some happy and sunshine today.

teeballmom

So I got restless leg syndrome during the Benadryl the first time for Taxol. What they did yesterday is increased the infusuin time from 30 minutes to 45 minutes and it helped a lot. Thank goodness. With my Taxol I get a bag with 50 mg of Benadryl combined with decadron then when that is done they give me a bag go Zantac. I am in and out of sleep but never completely out of it (at least yesterday I wasn't). I was listening to an older man's conversation with another patient and he had such a calming voice I was enjoying his voice. Very interesting since I thought I was only among a few that no linger plan for the future and just live day by day. This man does the same thing but he said it in such an eloquent way. Come to find out he was a Humanities Professor years ago. I can just imagine listening to a voice like that in class. It would have lulled me to sleep every day. Anyway, this Taxol/Herceptin infusion went well except I am now officially anemic. The ONC does not want me to get an transfusion unless my tiredness gets worse (since we're not sure if my tiredness might just not be from running our 2 littles ones to school and activities, helping with their homework and my great idea to volunteer for their schools Parent Club to handle all of the accounting for their fundraisers.  So I am being recommended to drink homemade bone marrow beef soup and eat more of my grass fed organic beef we have on hand. I'll do anything except eat liver to get this rbc counts up.  Unfortunately I'm finding it hard to find beef bones to make soup.  Our local butchers carry it around winter time, just not right now.

Good luck to everyone receiving treatment this week and no/minimal side effects.

Take care.

Moonflwr912

Tballmom, I too have anemia that is just hanging on, although being in the surgery of the month club doesn't help! LOL. I like liver but who can eat it often enough. I had to have two infusions over my tx. Can you maybe order the marrow bones from the butcher? Maybe they can get some in for you. (Auto correct filled in the word someone - but I think cannabalism might be a bit overboard) LOL Much love

bevg49

Scorchy, I'll tell you my story in a nutshell (if I can - I am usually quite long winded)... Anyway, had a umx on 6/7 and it was much easier than I had anticipated. Was home 6/9 feeling fine. I had a TE and the scar was beautiful (if you can really use that word to describe a surgical scar lol).... On 6/14 BS called and gave me good news. The PATH report was great, NED... Yay... Well 1 day later I felt slightly uncomfortable in my chest. I went to lay down and within 10 minutes it was swollen, purple, there was pressure and pain up to my clavicle bone... PS had me rushed to emergency room where my blood pressure was 81/54... Went into emergency surg where they removed 1,000 cc's of blood and the TE. 3 days later I started bleeding again, through the drains and my scar and my underarm and had another surgery... This one didn't end so well and I spent more than 24 hours in Intensive Care feeling like death truthfully and I was scheduled for surgery 3 the next day (4 if you count the original MX).... I had 11 units of whole blood, 2 of platelets and 1 of plasma in those few days... Anyway, by some miracle, I started getting better, went home and 10 days later, the scar started to open, and open, and open, til it was opened from end to end. They cfan't do anything for that but let it heal naturally which is where I stand now.  It's almost funny..... "the operation was a success.... The patient (almost) died".... hahahahahaha. I should not bitch. In comparison to June, I feel so much better and basically I have NED which is the best thing of all. I'm on Femara which has some sucky SE's but if it catches even one sneaky bitchy cancer cell it's all good.

I am reading a book by Christopher Hitchens, the famous, extremely intelligent and interesting atheist who is no longer with us. The title is Mortality and it is fabulous. He had esophogeal cancer and talks about it. No self pity. Brutal honesty. It is NOT a book that will bring anyone down. Quite the contrary. I found it uplifting in its way.... If anyone is looking for a good read, this would be it.

To all of you brave ladies, scorchy, McCook, Ramols, liefie, MrsCich, Juneau, websister, allur, Tazzy, tina, cindy, soya, jpmom and the new Miranda, I wish you a good day, a happy moment, no pain or discomfort, an easier time of it... With all the pink ribbons sold, you'd think they'd be able to do more..... Healing vibrations to each and every one of you (and PLEASE FORGIVE ME for the names I must have left out but defitinely did not mean to...) 

Moonflwr912

Bev, you're forgiven.... LOL

allurbaddayswillend

teeballmom, have you checked eatwild for sources of bones for broth?
http://www.eatwild.com/products/california.html

Squeamish folks avert your eyes! also, heart is often more palatable to people with an aversion to liver. Marinate it in some good dressing, peruvian anticuchos style, and broil it and it's just lean meat, really. http://www.food.com/recipe/peruvian-anticuchos-182583

hth

Moonflwr912

AYBDWE, actually, as kids we ate hearts. And kidneys, livers, etc. Guess we really WERE poor! LOL NOW I find that out..... LOL

Aruba

Hi all. When i read all the issues we all endure for our fight to KCA i think this group could write its own book. Going through this snowstorm together, but we are all unique snwflakes for sure! We all will be ready for the spring thaw! I am in the unique rad path now and just posted this in rads group

Just had another 2 ct scans, this time using breathing apparatus to help push heart out of way. This will set me up for final trial next week and then start to the rads with the breathing device. Really the worst part is the inconvenience of driving to main hospital each day downtown 35 mins vs the branch 5mins away from office. Just want to get this going already. Aww auto correct just typed jugs to all instead of hugs to all. How appropo!



You can't control the wind, but you can adjust the sails

Dx 7/12/2012, IDC, 1cm, Stage Ia, Grade 2, 0/1 nodes, ER+/PR+, HER2-

Surgery 07/20/2012 Lumpectomy (Left); Lymph Node Removal: Sentinel Lymph Node Dissection (Left)

Edit Delete

_Ann_

Bevg49, what a harrowing ordeal you've been through.  Wishing you speedy healing and no more complications.  Thanks for the tip on the Hutchins book.  I was on the fence about reading it, but now I think I'll go ahead.

liefie

Teeballmom: I don't know if your liver aversion extends to chicken liver as well. It apparently contains more iron than any other form of meat. It is very easy to make a delicious pate from it which tastes very good on crackers or bread. It is the only form of liver that I can stomach. After my hysterectomy I bled internally through the night after the surgery, and my hemoglobin went down to 59 - yes, I was almost a goner then, and almost unconscious before anyone clued in as to what was happening, but three units of blood later I was sort of okay again. My GP DH saw to it that this chicken liver pate was on my plate with every meal after that. Another way to get more iron, is to take Floridex, a fluid supplement which does not cause constipation, as iron in pill form will do.

Thanks to you all for sharing in my good outcome yesterday, and best wishes to everybody here for a good day. We are now so many people here that it gets really hard to address everybody individually. Bev, I just have to say that I think you have really had a very rocky road so far, and that it will hopefully only get better from here. Scorchy, you are also in my thoughts. Mcook, hope you find peace with whatever decision you make re rads. Cancer is not for the faint of heart. Are we brave and courageous? YES! Do we have a choice about that? NO. Only choice we get to make is to choose our attitude. It is a crazy business.

My day just got a whole lot better when I found out that the wedding photographer had posted my daughter's wedding photos AT LAST. We've been waiting for more than 2 months. Now to choose which ones we want from all the lovely photos! For the rest of my life I will be reminded of ca when I look at them, because of the wig I'm wearing. That's okay. I was there at least, and shared in my child's joy. That's more important than anything else! Srew cancer.

Tazzy

teeball... I am with you - I detest liver in any form.  Yuk, yuk, yuk.

hugs and love to you all.

Anonymous

liefie - you said it. Screw cancer! As for those needing to force liver down - i highly recommend you find a good kosher deli and try a chopped liver sandwich. Treated myself to one last weekend, as I was oddly craving it. I have to imagine its an aquired taste - but I love it and associate all kinds of happy family holiday memories with it. Hope you can find some that taste good! Sending hugs to all!

MrsCich

Hi ladies. I sitting in the waiting room of my PS waiting for my first TE fill. Ugh. I'm dreading it and I'm in a grumpy mood. I'm tired, bored, and just all around in a funk. Uugh!!

bevg49

shit and damnit, moonflower, I NEED to be forgiven !! Thanks:)...