August 2013 Chemo Sisters

jnprsn: Is there something you could do to occupy your time that will work with the having to move all the time with steroids. Maybe scrapbooking or start cleaning and organizing closets and cupboards, you can do a little at at time, journaling, read a good book (when concentration is good) watch a good TV series, I'm just starting to watch 24 with Keifer Sutherland (looks good) Its on Netflix.

I know what you mean about the anxiety over reconstruction, my surgery is getting closer and I've noticed that I'm becoming a lot more anxious as the date nears, second guessing myself and worried about being under for so many hours (I've been under for other surgeries but never for the amount of time the BMX with recon will be)

Find a good distraction and keep distracting.

Love,Rayna

Oh dear lord! These steroids have left me with MUST EAT ALL THINGS!!

I am unhappy with the information of what to expet coming from oncologist office. This is just another nail in their coffin. Not that I'll quit treatment but find another outfit.

Hey, it's just me, but I would think that SOMETIME before your partner bundled you up to take you home they would have mentioned the necessity of using barrier contraceptive after treatment! It's not like the many hasn't been to every other meeting I've had there.

Not giving me a warm and fuzzy.

Wing48 and lisa: I totally agree on the sex thing, i would not have known to tell my husband he has to use a condom had I not come across an article that mentioned it.



Steroids also give me the munchies, I guess that would be the weight gain thing.



Lisa: You are so right about surrounding ourselves with people who lift us up and not put up with anything less. This is our life we are fighting for. So sorry to hear about your Mom and the reactions you got. It still boggles my mind though because I'm sure I would react the opposite and lend my support. Unbelievable.

Love, Rayna

I just finished reading all 30 pages of this thread and I feel like I'm part of your group even though I've never posted. :-)



I was dx on 8/1, but haven't done anything yet other than tests, tests and more tests. It has been a stressful summer... I found my lump at the beginning of July while on vacation. I was gone for over three weeks so I didn't get in to see my dr for exam and biopsy until July 30. I knew it was cancer immediately though. My MO is here in Abilene (TX) but my surgeon is 3 hours away in Dallas. I went there for consult, bone scan, CT scan, breast MRI, two more biopsies and a brain MRI. End result is stage 3, ER+/PR+/HER2-, BRCA+. I am 40yrs old, married with two kids (7 & 11). Drs in Dallas wanted chemo first, MO here said I'm BRCA+ so might as well just do surgery first. Saw surgeon again and she STRONGLY advised me to do chemo first, she called MO to have a chat and now he is on board. I had PET scan today and chemo class Wed. First tx should be Thurs or Fri. I had an echo done to check my heart and if that's OK I will have ACx4 and Tx4 (I think). I'm also planning on using cold caps. I know ACT isn't the best regimen when using caps, but I want to try.



My kids are doing great. My son who is 11 is very stoic and internalizes everything so he doesn't say or ask much. My daughter is the opposite... sensitive and emotional and scared. They are amazing though. Thank God they have school, church, football and softball to keep them busy and not focused on their sick mom.

Anyway, just wanted to introduce myself. I know I am chiming in late in the month, but I didn't see a Sept chemo group and I wanted to get an idea of where you all were in terms of how you are handling everything.



For me the anxiety, waiting and worrying has been the worst. And the not sleeping. It seems like the minute I learned I had cancer, I lost the ability to go to sleep!



Michelle

Lisa,

I'm not exactly hiding my journey; however, I am not broadcasting it, either.  Only my siblings, daughter and a few others know.  No one at work knows either.  I've always been very private.

But you're right, people don't know how to respond.  I found myself trying to uplift and encourage a family member that I would be OK . . . that's a heavy burden to carry.  As soon as she heard me on the phone, her voice dropped, she sounded sad + was lost for words like I died.  That's when I decided not to talk about it; I need all my energy to keep my spirits high + to keep a positive outlook.  I can't carry other peoples burdens about what's going on with me, too.  When chemo is over, I will be more than happy to share.  Plus I don't want anyone feeling sorry for me because I don't feel sorry for myself. 

Barry took this picture of me this morning before we went to chemo. I wanted to documentmy hair loss. This is my real hair. I'll put one on of the wig when I lose my hair. I was told it would be about 2 weeks!

I'm back, but since I went to sleep at 12 p.m. and awoke at 4 a.m., I am vey tired. My infusion went very well. No SE at all. When we got home, I had a slight stomache ache, but I had taken a laxative when we got in the car. We hill walked and it went away. Amazing. I'll resond tomorrow. I think I can sleep tonight so I have to get in bed. When I get up in the night to wee, I will also brush my teeth with Biotene  and use the gel  on my gums. I will gargle with saltwater and soda for my slight sore throat. I had it when I got up but it's worse tonight. Gotta go crash but watch out, I have to take those 2 steroid pills again tomorrow! God bless you for praying for me. It made me confident and very calm today. It was not a bad experience at all. I have lots to tell you, especially about a young woman in her 6th year of breast cancer metastesis sitting there eating junk food and drinking a soft drink. She said cancer is bad enough. She isn't going to torture herself by some diet. Gotta' go. Love you gals.

ForMyGranddaughter - oh, the dreaded "cancer voice" as I call it.  I actually had to have my husband tell my mom to stop talking to me with the cancer voice or I wouldn't be able to talk to her for a while.  I KNOW she is sad and upset and mad and feeling helpless (she's in NY, I'm in TX), but I am barely hanging on emotionally, I can't take on her sadness, too.  She would talk to me in this quiet, sad voice like I was already on my death bed.  So now I tell people when they find out to please NOT talk to me like that.  I can talk matter of fact about the details of my cancer, but if someone hugs me or looks at me a certain way or talks in a way that makes me feel sad, I will cry at the drop of a hat and I am SICK OF CRYING!

I think one of the things I hate the most about this whole thing (aside from the life-threatening aspect...) is how NOT private it is!  Even well-meaning people who care about you will talk about you.  I have only shared specific details with my husband, my best friend (who doesn't live here), and my family.  Somehow word gets around, and people know things about my treatment that I would rather not share!  I have had to share things with more people than I'd like to because of our kids... asking people to watch them or pick them up from practice because I'm at a particular appointment, etc.  This is such a personal, private journey and yet I feel like I'm not allowed to keep it that way at all.  My friends have started a group Facebook chat to keep everyone informed, they are making t-shirts to wear to support me on my chemo days, etc.  I appreciate the sentiments and know their hearts are in the right place, but for someone who absolutely HATES being the center of attention, they are going about it the wrong way!  I appreciate the prayers, I appreciate meals or someone taking care of my kids, but spreading my news around town to people who don't even really know me?  Ugh.  I just found out yesterday that everyone knows I'm going to be using the cold caps.  REALLY?  I haven't told ANYONE!  Other than my husband and my family.  I didn't WANT anyone to know, because it's going to be awful enough if they don't work, but now I"ll have to answer all kinds of questions about it. 

Sorry to vent!

Welcome Lighthouse ( bout time we had another Texan on here)! If you've read all our posts you know us pretty well! You are MORE than welcome to join the group. Lots are starting this week, and many of us have #2 next week, so you're not so far behind.



I swear if someone started a tshirts campaign for ME I'd spit nails! I

know people "mean well", but sometimes they insist on things being done THEIR way, and that's just all about them.



You've got a leak somewhere, honey - and you'd best fix it I quick! I mean, heck, it's like stalag 17 up there in Abilene or something!



Sharonanne! Get some good sleep! Glad everything went well!



Gilded cage, thanks for speaking up - couldn't remember which of us was up tomorrow for number 1. It will be over soon, then you can join the rest of us in our trade of anxiety for when-will-this-be-over Land.



Which reminds me, JNPRSN! You re new here too, aren't you? Can't remember if not, so sorry! anyway, GET SOME DRUGS. You have every reason to be anxious - call the MO and get something like Ativan. You can nibble pieces off if you don't want to take a whole one. Our docs are prescribing it for nausea, so it will work for that too. Tell your doc you can't sleep and you're losing weight. You need rest AND some pounds to fight this thing. I'm serious, this is no time to "tough it out". You're about to voluntarily poison yourself under drs advice, that s some serious stuff! Trust me, I've been a mental health professional for more than 30 years. Even if someone has a drug abuse history, they should be able to get some benzos even if it has to be carefully monitored.



Ok, enough from me and I not even ON steroids (at the moment).



Love and hugs to all! Sorry if I left anyone out, but I ran on long enough!

I really admire how you young mums, sorry, moms, handle telling your kids. I think it has to be a really individual thing that depends a lot on where your child is at. Even telling my 19 year old, I let things out slowly. I told her about the tumour, she was upset but went away and found out that she had friends whose mums had had it and recovered, so suddenly I wasn't about to drop dead in a hurry. Then a day or two before surgery, I told her about the lymph node involvement. And it is only recently that I mentioned it was grade 3. I'd did it like that coz I thought she'd google and find all the worse case scenarios, by doing it slowly she had time to find out positive stories and could see I wasn't falling apart either.

Girl friends - it's really interesting who is there for you and who isn't. Some of the people I would have expected to support me definitely haven't coped, whereas others who have not been particularly close have been brilliant. One of my husband's junior workmates who I've never met, has been the most brilliant meal maker. It is hard not to feel hurt by the ones who once were close, but some people just don't know what to say or do.

At the moment I'm finding the ones who say, "you'll be fine" hard to handle. It's because it is often said dismissively ..."you'll be fine, no need to say or do more, and don't make a fuss". And I think, well actually hopefully I will be, but I may not be, and it would be nice to have your support in the meantime.

As for the t shirt support, yep I'd be running around with a bag over my head but then I guess they are doing what they think is loving and caring. Tricky!



Glad it went well Sharonanne and hope it did for everyone else. By the way, I wasn't serious about you turning into an international drug smuggler! I had steroids too but they didn't seem to have much of an effect on me. My problem is the no energy one. They didn't even really boost my appetite. ...although my current turtle cake interest may be a sign of things to come!

I'm starting to find it hard to remember who said what...going to have to start note taking.

Hi Lighthouse Lady, this is a great group of women who really get it! We will get through this together.

I started on CarePage.com an informational site for myself to refer friends and family to find information I am willing to share. I try to update it every week. This so far has helped keep it contained and stops the constant phone calls. I am asking for text messages instead of phone calls, and have asked to please keep me off face book. This has really helped keep those who need to know updated, and those who don't at arms length. This will be a long process for me, 6 months chemo and then surgery and 6 months recovery, so I am hoping it will continue to be useful. See if this works for you.

I have been off this week, my blood work is out of line, and I have hit a bit of a wall with fatigue. They dropped my steriods to 4mg at the time of infusion, and where did all the energy go?

Rayna, I did check out the Ta Ta Sisters that make an annual trek to Las Vegas. I think it would fun to have whoever can from our group join in next year. I love the shows, gambling is not my thing, but the entertainment is wonderful.

The insurance and the genetic lab are having a stand-off about my BRCA 1 & 2 testing. Anybody else having this problem? They want me to authorize that I will pay a $4,000 bill if the insurance does not cover the genetic testing. Unbelieveable!

Well, blood test tomorrow to see if my labs are more in line. Hope your day is filled with little or no side effects, and lots of love sent your way.

Just reading back a bit-

Tonya I was wondering how the camping went. I thought that was quite a big ask of yourself. Well done for getting out there and going. I'm having my 'kiwi cut' on Friday too. Name of cut courtesy of

BellaMomma! My husband has just questioned whether I should. He said you might not lose your hair...I've just started to realize that maybe he hasn't quite got his head around all this. I think he has been hoping it wasn't really going to happen. Mine is quite long. I'm not getting it shaved just a sort of ....well very short Mohawk. Thought it'd be fun : )

Has anybody's not fallen out after having your cut?

Hello Ladies,

     Have room for one more?  I'll be starting chemo this Thursday 8/29/13.  Just made it in here in the nick of time.  Just to give a little background info.  I was initially dx with triple negative Stage 2 breast cancer in 10/2011, had chemo 11/2011-5/22/12, had lumpectomy 6/8/12, and radiation treatment 8/2012-10/2012. 

     This month I found out that I have cancer again, don't know the origin yet, but it has spread and am now Stage 4 with mets in brain, lungs, bones, appendix, neck, shoulder, just about everywhere.  The good news is that I have started radiation to my brain within days of finding out.  My new radiation onc reassures me that all my tumors are so small that radiation should kill them all.  My new onc sped up the whole process of scans to treatment so I have confidence I will beat this again!  My onc recommended we start chemo while doing the radiation treatments to stop other cancers from spreading and growing, which I totally agree with, so will be starting this Thursday with brain radiation too. 

     I hope I didn't scare you all with my news, a great lesson I have learned from this experience is that you have to be your own advocate.  Demand PET/CT/MRI scans, don't believe and only rely on blood tests once you are done with all the treatments and surgery.  Don't ask, demand them, it could be a difference of life or death.  I wish I would have done it earlier.  This does not happen to everyone, so don't freak out, I'm just a freak of nature case.  I had a lingering cough for over 2 months, I found lumps in my left neck, left shoulder, and back of head.  Look for changes in your body, however small they may be.  You have to really get to know your body and notice slight changes. 

     Since I have been through the process once already, if you have questions I am able to answer, please don't hesitate to ask, if I can't answer it, I'll find out for you through Dr's and more experienced sisters here.  Hope you all have a no SE day and thank you for letting me join in.

Gashgold, re hair. I'm Day 15 now, and my short hair is gradually falling out. If I pull gently bunches come out. I figure if I don't shave soon I'll look like one of those old well-loved stuffed animals where the fur is worn off in patches ; )



I will try to make it to the weekend, to look a bit more normal at work! Your husband is wishful thinking, lol! Everyone's says how it's OUR choice, etc., and I agree with that - but our husbands also have some emotional investment, often in our hair (sometimes to the point of a fetish, bit I digress to my first husband again ; )



You might wait on the haircut? Just until a gentle tug brings out several strands every time, so he can see that it's inevitable. As much as we need to be in control of what we can, we also need to remember to be gentle with those who are closest to us in going thru this thing. Guys aren't as tough as they are trying to appear for us, and it's got to be difficult looking STRONG all the time.



Sorry to lecture! Up,with a headache, which I am starting to believe is due to the ibuprofen. Rebound headaches from overuse... Wll try not using it today, see how that goes.



We have a birthday today, right? Who's the 27th?

Welcome naan1004!  We are happy to have you.  May God Bless you richly.  May He not only meet your needs but exceed your expectations!

Carol, believe it or not, it's not the insurance.  The Drs are trained this way, ridiculous!  My surgeon informed me that once the surgery is done and nodes are clear, I had 5 removed, then no need for scans.  I said, well what about all the nodes that weren't checked?  I think she has learned her lesson too and will definitely recommend scans for young patients like me who are high risk, even if it means she catches 1 out of 100 patients.  It has definitely been a learning experience for both of us.  It's what they call protocol, and I say screw it, I'm not part of this, I'm a high risk patient!  My new onc yelled her out and made her feel bad, but I think she really needed this wake up call so she never has another paient like me again.  She treated me like her own sister, I think she took the news harder than I did.  Poor girl!