Illinois ladies facing bc

kjiberty

camilegal:  I am going to take the anastrozole this am.  I know I need to start, so wanted to do it over the weekend.  Just got my refill for the lorazapam just in case.  Slept last night (of course was up for about an hour at 3 am), without chemical assistance!  Yeah!  Hopefully, that won't chance with the wonderful rx I am adding to my repetoire today.  

lago

Lynn I was on Calcium & D while on chemo. The bone pain from the nuelasta was the worst the first time but not as bad after that. I just took aleve. It only lasts for a few days. I actually heard taking D prevents bone pain with some of these drugs.

kjiberty good luck. Remember not everyone gets these SE. Most women do very well on ESD.

kjiberty

Thank's Lago.  

beata44

Hi Ladies,

I havent been to the boards in a few weeks.  I've had a terrible recovery, and I just need some kind words and support.

In a nutshell, I had a BMX with immediate implants 5 1/2 weeks ago.  2 weeks after, I ended up in the ER with a high fever and high WBC.  PS's team came by, didn't think it was a surgical infection, gave me an IV antibiotic infusion, and sent me home with Augmentin (antibiotic).  4 days later, PS decided to do a revision due to some areas that didn't look to be healing.  So 3 weeks after my original surgery, I went back in.  Woke up to PS saying, "We found the infection. You are now inpatient."  I guess my skin didn't like the mesh.  I staye for 2 nights while they grew the culture and found the right antibiotic.  I went home Friday night with a PICC line and IV antibiotics.  17 hours later, I was back in the ER with a high fever and even higher WBC.  After debate, the PS and infectious diseases decided to send me home with the original plan.  IV antibiotics seemed to work, fever gone, WBC normal, PS seemed happy.  Told me to come back in a few days to get rid of last drain, and then he'd see me in 2 weeks.  So I go back (he is out of town but his fellows/residents saw me).  Head fellow didn't like some healing so I have another revision scheduled for Tuesday.  I am seeing PS himself Monday, who will either confirm the need for surgery or cancel it.  I will tell him that if he doesn't think this will be the end of it, I want the implants out.

I think I am officially depressed.  I started seeing a counselor, who prescribed antidepressants I am picking up this morning.  I also still have Ativan. But I am so sad.  I cry every day.  I also found out I need 6 rounds of TC chemo (my oncotype score was in the intermediate range).  I am scared of chemo, and I hate to lose my hair.  Also, the thought of losing my implants after 6 weeks of fighting makes me sad too.

Summer has passed me by.  I have 3 small kids (7,5,4) and I haven't done anything with them.  My 5 year old is takng this hard and is lashing out at everyone.  She went to the mall with my mom last week, and my mom overheard her wish in the fountain - that mom gets better.  She told me last night that she had a nightmare that mom never got better.  It kills me to see her hurting like this.  If I could get my own mood up, maybe I could console her better.

I just feel like I've hit rock bottom.  Any words of advice for me?

Thanks,

Beata

IllinoisLady

Stop! Breathe deeply.
Begin bringing peace to the outer world
by regaining your own inner peace.
Choose love, choose gratitude,
choose forgiveness, choose peace.
Begin with your own inner peace.
Then use that inner peace
as a platform from which
to approach the outer world
with perspective, understanding, and patience.
- Jonathan Lockwood Huie

kjiberty

Beata: My heart bleeds for you.  I wish I could come over and give you a big long hug and stay with you until you heal!  I, too, was in the intermediate range on my oncotype score.  Why did the MO recommend 6?  I had 4.  My score was 28, FYI.  I would check with your MO on that.  We all who have been through the chemo understand the hair loss issue.  I cried and cried.  We all complain about our hair (when we have it), but when faced with losing it, we love it no matter how it looks.  I am now 4 weeks PFC and it is growing back, but have to go out still with my wig.  I only wear a buff when I am at the gym.  I feel so badly for your little one.  I am sure she is just worried because you have been hospitalized so much.  Sending major ((hugs)) your way and prayers!  Love ya, girl!  Hang in there!

IllinoisLady

Beata44 - I am so sorry to hear all of this.  I picked out today's quote before I came in to read.  I think one thing that can be so important ( but could take a lot of work ) is to TOTALLY accept where you are right now and yes....that is not in a very good position.  When things are not so well with me....I try to focus on anything....no matter how small, and as long as it is positive stay there until I start noticing something else positive.  It is hard to "accept" so much that you don't want.......but sometimes not wanting it and fighting it tends to hold it there more firmly than it does to push it away. 

Do think getting something for 'depression' is a good start toward getting a handle on your several issues.  One success at a time.  All of this is hard on you and hard on children, but they are often stronger and more resilient than we can imagine. 

Once you completely accept where you are, I think you can begin to  move to a much better place.  You will get a lot of love and support here so hope you will keep coming back.

Hugs, Jackie

camillegal

Oh Beata what a nitmare u've been going thru. And u;r kids are just waiting for u to feel good again--that's what they want. And everyday it seems like u r facing another challenge, this will be a memory u will choose to forget. But U'll see a Dr. Monday-right? Hopefully there will be answers for u that will start u on the path to wellness. (((HUGS))) to u and u'r family.

camillegal

KJ---u go girl take those meds. LOL

zap

Beata, I just dropped in.  My heart goes out to you and your family.  Can your mother stay with you and help with kids/house.  Also, can you ask your counselor if he/she can suggest someone to talk to the kids; especially the five year old?  I know that cancer wellness centers fo have  services to work with families and kids.  We have one in Northbrook.  Could there be one near you in Western Springs?  I know you feel too awful to take them, but perhaps your mom or a friend could be sure they see someone. It sounds like they need some reassurances that all this is just a bad spot in the highway (although that is very hard for kids to get).

I wish you well.

Susan

valerie0118

Beata, My prayers are with you and your family! 

OK....I have a question about the compression sleeves.  The MO had me get two.  I am not having any swelling.  In fact I have lost an inch off of my upper arms since before surgery.  I haven't been wearing them to exercise or while playing golf.  Should I?  or should I just wait and use them for only travel unless I start to see some negative changes?  I'm very hot when I exercise and when I put them on and just walked around, I was very uncomfortable.  I have been lifting mild weights 3X weekly, doing a lot of walking and biking, using TRX bands, all without any noticeable edema.

lago

Beata I know my onc gives a book to moms about cancer to read to them (was told by another gal who has young kids & same onc/bs). Not sure which one it was but this one gets good reviews: amazon linky  Also check out this: linky on bc.org  

I would also ask your onc if s/he knows of any book or help you can get for your daughter… or for yourself so you can talk to her about this.

Bottom line is breast cancer treatment is a time suck. It does eventually end. We were all scared of chemo… because we had no idea what would be coming. Most of us do OK. Typically you will not feel bad the entire time. At the beginning it might be for a few days and not too bad. By tx 5 or 6 it could be a bit more intense and a couple more days. I remember telling my onc that the flu was much worse for me than chemo SE… much worse. Granted everyone is different but don't assume you'll have it the worst. I assumed I would get every SE. I didn't. I didn't even get nausea. It really is a wait and see.

Recon can require some extra surgeries. You might want to get a 2nd opinion. It is possible that direct implant isn't working for you. You might get that 2nd opinion and possible wait till after chemo to go forward. I know where I was treated they wouldn't even let me get expansions in my TEs till chemo was done and my white counts were up (my onc had to give the OK). There are other reconstruction options as well. Bottom line is you don't have to solve the recon issue now.

♥ ♥ ♥ hugs ♥ ♥ ♥

invisible2

Beata - I ended up having two surgeries - my BMX and an additional surgery due to necrosis. I was so down about having to go thru it again and you have faced so much more. I am not surprised you are feeling depressed.



I won the TC*6 lotto as well. I didn't have positive nodes but my Mammaprint test indicated I was high risk. I was told without chemo I had a 30% chance of the cancer returning. I had my first round on 7/17. I didn't have too many side effects but like you I am heart broken at the thought of losing my hair. It hasn't started to fall out yet but when it does I will be devastated. I can't explain why...but for some reason hair loss seems worse than breast loss. Maybe because it is a very public display of "I have cancer" that bothers me.



Lago keeps telling me that it's all a big time suck. Oh boy is she right. I read some recent posts by Lago and others who are surprised by their two year anniversary. We are in the midst of the battle so it seems hard to believe that the two year mark will surprise us.



I highly recommend Yoga. I am working with someone who is teaching me how to relax my body and breath. It seems so simple. No pretzel moves...just deep relaxation while flooding my body with O2. I have cried through many of our sessions but I always walk away with a deep sense of calm and well being.

{{{Hugs}}} to you!

invisible2

A question....

Does anyone have a good way to create some temporary breasts? I was not able to have any fills before chemo began so I am as flat as a board. The prosthetics are so expensive and because I know it will be temporary I can't make myself buy them. My recon won't begin until 30-45 days after my last chemo which puts me at December or January. I am wearing a padded bra right now but it's not working out very well. None of my clothes fit and I can't wear knit tops or t-shirts because I feel very self conscious. Do the poly filled forms work? If I could get myself to a C cup my clothes would look so much better. Any suggestions?

lago

Invisible here you go: linky 

NOTE: these are also good for swimming and not heavy like the breast form  BUT your insurance should cover this. Ask your PS for a prescription if you really want them. I know they were ready to send me for a mastectomy bra since I only had 3 expansions before chemo but I was so small it really was not big deal for me so I didn't bother. Just wore camis.

One more thing. If you go swimming make sure they are secure. These do float.

invisible2

Thanks Lago! Great link!



I got the RX for the prosthetic but my insurance doesn't cover much of the cost. I guess I keep thinking that it's such a waste of money.



No worries about swimming...because I can't! I stay as far away from pools as possible!

stjude10

Beata so sorry you're having a hard time. Tomorrow will be 1 yr since I got dx (also my birthday). I can't believe how far I've come...6 surgeries, chemo, port, te, implant, bald, hair growth. When I think of it all, it's a bit overwhelming. I now have some hair, at times I have lashes and brows, am starting a class in 3 wks. I still feel tired now and again, but feel stronger every day. I send you hugs, and hopefully hope, that this too shall pass.

zap

Those picture books on mom's with BC look great!  I wonder if the Western Springs library have one or two on hand.  The one on the mastectomy  looks like it is worth a look. I want to go  to my own library to look them over.  Could be great resources for moms with young children

Valgal

Dear Beata,

I  haven't been on for ages but when I read your post I had to let you know about this wonderful place in Hinsdale called The Wellness House. Check out their site it's for patients and their families that are dealing with cancer. I think they have things for your children and its all free. Maybe it will offer some help for you and your family. Best wishes. www.wellnesshouse.org

Valgal

Dear Beata,

I  haven't been on for ages but when I read your post I had to let you know about this wonderful place in Hinsdale called The Wellness House. Check out their site it's for patients and their families that are dealing with cancer. I think they have things for your children and its all free. Maybe it will offer some help for you and your family. Best wishes. www.wellnesshouse.org

Valgal

Dear Beata,

I  haven't been on for ages but when I read your post I had to let you know about this wonderful place in Hinsdale called The Wellness House. Check out their site it's for patients and their families that are dealing with cancer. I think they have things for your children and its all free. Maybe it will offer some help for you and your family. Best wishes. www.wellnesshouse.org

doxie

Beata - So sorry you are having such difficulties with the BMX.  I can't offer help there, but will try with the kids, chemo and depression.  Multi tasking seems like a dirty word here, but this could help with your depression. (I've fought depression for most of my life so know at least what has worked for me.)  Take your kids, one at a time or all at once on short walks.  This will give you time with them and get you outside and exercising.  Talk about what you see around you or just let you kids chatter.  You'll feel better that you are spending time with them and being in the sun and moving will help your mind and body.  Kids are resilient.   Reading the bc books, cuddling and talking, being appropriately honest, being strong (may be the hardest) in front of them will help.  

Don't be afraid to get help professional help.  Depression meds work better with concurrent counseling. Sometimes you know exactly what you should be doing, but need a therapist to support you in doing it.  Sometimes you need someone outside your family, friends and med team to listen and help you process what is going on.  

BC treatment takes time from your life, but gives back a different kind of time.   It's not one way.  You can turn it around and find something positive.  Look for the smallest things that are good.  They are there. 

I'd suggest a 2nd opinion on the TC x 6.  Another MO might suggest only 4 rounds.  My Oncotype score was 30 and I had 4 rounds of TC w a partial MX (lumpectomy that takes the nipple).  I asked my MO if a higher score would change my chemo treatment and he said no. Our dx is similar, but clearly the difference is age.  (My DD is an adult.)  Your MO might want to be agressive because of your age.  Having BMX is pretty agressive in and of itself.  There are forums here for younger women and on chemotherapy.  You might get help from them on how agressive you should be with chemo.  

We are here for you. 

doxie

Greek Islanders - sorry I missed the party last weekend.  I was planning on going, but my sister needed me in MI.  They had to put down their beloved 14 year old golden retriever.  They don't have kids so this dog was at the center of their family.  

Hope to make the next event that lago is putting together.   

lago

Beata I forgot to mention all help from the American Cancer Society is free regardless of income. They have a 24 hour hotline: 1.800.227.2345. They also have social workers on staff.

valerie0118

invisible,  I so know where your coming from!  I'm trying to match my TE with my survivor breast, lol.  The poor survivor has taken a real beating with the lumpectomy, re-excision, and radiation treatment.  She is really droopy and even an underwire bra doesn't seem to pull her up enough.  I almost wish I had just done the bilateral.  So hard to imagine that those girls are ever going to match again. Didn't think about matching them at the time.  The PS said not to worry.....that he does great work, lol.

 My final fill is tomorrow and I'm supposed to meet with the PS to discuss the exchange that will happen probably mid-August.  I only have a few weeks to go but I'm going to a professional meeting and don't want to be lopsided, lol.

camillegal

Oh Beata Lago is so right--I was privileged to get help from the cancer socitey, when I had rads--somedrove me everyday, It wasn't a long ride but I had to merge in traffic and I don't do that. So for every single day they were on time and took me home--wonderful volunteers some never had cancer just volunteering. And The lady who organized it all (forgot her name) would call to see if I needed other help too. I give to 2 cancer societies but that's all I do and nothing cost anything--So listen to Lago there might be many more things they can do for u.

IllinoisLady

"I ask not for any crown
But that which all may win;
Nor try to conquer any world
Except the one within."
- Louisa May Alcott

LisaMomOfFour

Oh Beata -- that sounds miserable!  If you weren't depressed by all this, well that would be a miracle.  I would second what Valgal mentioned... Wellness House in Hinsdale is wonderful.  When I first sought help, I did NOT feel strong enough to deal with anything in a group setting, and was able to set up one on one counseling with a psychologist, free of charge.  She was terrific.  There are a lot of great resources there for kids... at the time I did not take advantage of them.  I did eventually do two classes there... Mindfulness, which really did help me quite a bit with stress control, and On the Mend, which is for when you complete treament.  

Hang in there, the treatment is a total time suck.   You have had more bad luck than most with your surgical complications.  Hopefully chemo will be a breeze in comparison.  I found chemo to be not all that bad.  Not fun, but I was able to prioritize, I dished all of the unpleasant things in my life to my husband and our nanny (like dishes and laundry) and I reserved my energy for my children's activities... soccer and basketball games, orchestra performances, recitals etc.  and I was able to make most of those things, and my husband was a sweetie about dealing with a lot of the household nonsense that typically fell to me.  

Hang in there.  PM me if you would like, I live in Downers, right up the street from you and I would be happy to go with you to Wellness House sometime.  It is so hard to walk in there alone the first time, I sat in the parking lot and cried and cried until I got up the nerve to go in.  Once I did, it was so very helpful, and I never had an issue walking in there after that.  

Lisa 

camillegal

Lisa that is so very nice of u==with a wonderful idea.

invisible2

Once again Lago offers good advice! There is a Living Well center in Geneva. They offer so many services. Almost all are free. There are 4 or 5 weekly Yoga classes, counseling services, spa services, plus so many other things. It's an incredible place.