April 2015 Chemo Crew... Starting in April? Please join us!

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  • GingerChi
    GingerChi Member Posts: 252
    edited September 2015

    Jen: Very happy that you're getting positive news from all the docs! :)) Hope you're resting easier since seeing the BS!

    Addie, lookin good even with all the bandages!

    Renee: Hope the skin issues improve quickly! Also hope your week is going well...I can only imagine the anxiety that came with returning to work, and at a different job no less! If its too much, do you have the option of taking more time off? I had 2 part time jobs at that I haven't worked at since BMX. I really should get back to one of them before long..depending on if I have to do rads. I was a "floater" in an office environment in one of the jobs, which I enjoyed at the time..I helped out whichever department needed me, so I had no set duties. I don't know if I could handle learning new tasks often at this point... I may give that one up.

    Andrea: Congrats on the movie, how neat!! Wish we could see! Its not on youtube anywhere? lol Hope rads speed by for you and your soreness improves. Those danged headaches...glad they're not as bad as before, but they are never fun!!

    Positive Spirit: YES, I'm still doing chemo...3 more Taxol to go! I'm set to finish on October 6th.

    This group has been such a Godsend for me. I feel like my friends get tired of hearing nothing but medical talk, but its almost like what else is there to talk about? I've been very blessed in that my close friends have stuck by me, and I get out with some of the girls a couple of times a week. I'm going to an Initial Outfitters party tonite....lucky me, some of my family members have gotten involved with this company, so every couple of weeks there is a party to go to. Good thing I'm into earrings these days. lol

    The weekend is almost here...YAY!

  • Addie29
    Addie29 Member Posts: 307
    edited September 2015

    For all my tn sisters.


    steph honestly it isn't that bad. The most pain I have is getting up from the lying down or sitting only because of gravity. But like I said they have me wrapped pretty tight. When do you go?



  • lovlilynne
    lovlilynne Member Posts: 405
    edited September 2015

    Hi ladies, I have a question for you, actually two - one medical, and one emotional/psych.

    Are we supposed to still be extra careful about infections and such? Or should our immune system be back to normal - I mean, I'm 7 weeks PFC, so I assume that hand washing my daughter's dirty underwear is not going to put me at risk?

    The emotional question is longer. I feel like I've handled this BC thing pretty well emotionally. I've gone through the stages of grief, and I've had the occasional worry moments, but overall I've been ok. I try to be positive, but what are you all doing about thoughts of the future and having an asterisk or disclaimer in your head of "if I'm here"?

    For example, we had our house painted this summer, and I was talking to my mom about how it was done the last time compared to this time, and I said how it's supposed to last for 10 years, but I guess we'll see. Then in my head, I think "if I'm here to see it". Or when my youngest ran in to me excited to tell me that when she has 4 children (two girls and two boys :-) what she is going to name them - and I responded to her that I can't wait to see that, but in my head I wonder if I will. Do you guys do that? Is that negative thinking? If so, how do you stop it? How can you replace those thoughts? I remind myself that none of us knows if we are going to be here tomorrow, but we don't go around thinking that with every future thought (What should I make for dinner tommorrow? If I'm here to make it . . . "). So, why can't I just focus on a future?

    On a somewhat related subject - I haven't had too many awkward social moments or friends acting weird (thank goodness!), but I have had a few. Earlier this week I was talking to a mom that gives my daughter a ride to school when I cannot, and she was asking how I was doing, blah blah the usual, and she asked if I was talking to anyone (counseling), and I said no, and she said that she knows someone who went through this and found a good place, and she would get me the contact info. Then she repeated it. I didn't know what to say - just said thank you. But that is weird, right? She still hasn't sent it to me either. Anyway, it makes me realize that my outlet/counseling has been this group, and I also want to voice my appreciation for you all. This group really has been more than any counselor or group could be.

    Lynne


  • lovlilynne
    lovlilynne Member Posts: 405
    edited September 2015

    Drat - I just remembered that I had another question for those going through radiation (I haven't joined a rads group, so hope you don't mind the occasional rads question). Are any of you using corn starch? I was told that I should use it 4-5 times a day. Well, I haven't really felt the need yet, but yesterday RO said I really have to start using it. I would like to know your experience - I'm putting all these other lotions, etc. on the area, and I feel like adding the corn starch I'm going to have a yeast batter going after a couple applications :-)

    Lynne

  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited September 2015

    Thanks again you guys for being here though the good times and the bad. I did get a little peace of mind from my surgeon- mostly along the lines of " well, when I had cancer, he knew right away, so if he thinks its 95% scar tissue/sutures/granuloma/ then he's probably right.". So, I am doing my best to let it go until my next appointment.

    Lynne, on Rads- I never heard corn starch- just lotion, lotion, lotion. I'm a little over half way, and my hide is holding up, for what its worth. Also, I am in the same dark place as you, I think. I'm going to meet with my Onc. here in a week or so to talk antidepressants, and start seeing my therapist again. Seems pretty normal.

    Addie-LMFAO the BloodHound Gang. YES! I think my DH still has one of their CDs rolling around in his truck somewhere. Good stuff. Bet you never thought you'd be getting so many requests from women on the internet to see the girls LOL!

    Also, Oh my god, I wonder how we can all get in on that vaccine study! It would be a mirical...

    Ginger! So Close!!!!!!!! Way to go lady!!!!!

  • Stephmoen
    Stephmoen Member Posts: 563
    edited September 2015

    I have double mastectomy and getting te put in Monday I have a wedding I am supposed to go to 10 days post I'm worried how will I feel and what will I wear! Ugh stupid cane

  • Addie29
    Addie29 Member Posts: 307
    edited September 2015

    10 days post I would think you would be okay. Just take it easy and don't over use your arms. wear something loose fitting. That's what I would have done if I had a wedding to go to after my surgery. Good luck and I will be sending healing vibes your way.

  • ksusan
    ksusan Member Posts: 4,505
    edited September 2015

    I went to a wedding shortly after BMX. I suggest using a cane (even though you don't need one). It signifies "PAY ATTENTION" so you don't get grabbed or given colossal bear hugs.

  • KBeee
    KBeee Member Posts: 5,109
    edited September 2015

    Find a t shirt type dress for the wedding that you can step into and don't have to pull over your head, or something that buttons up the front.

    Lynne, I have no idea what my blood counts are. I kind of wish I knew. I think I might be kicking around a UTI, so if I still feel that way next week, I will go to my family doc and ask her to draw labs while I am there. I also have those moments just as you describe. I watch my kids do something and wonder if I will be there to see their events in a couple years. It about takes my breath away when I have thoughts such as that.

    Addie, how are you feeling?

    I completed 15 of 30 rads today. I am definitely feeling more tired. My skin is holding up ok. It looks like I got quite a sunburn and just kind of feels that way...like I went to a topless beach with baby oil on one side and sunscreen on the other. It is only flaking in 2 spots...collarbone and upper chest.

  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited September 2015

    Ha! Screw waiting a month to see if this scar tissue goes away. I'm getting it excised on Monday. Sooo....only potentially 8 days until I find out exactly what it is, including time in the path lab. My surgeon was actually expecting me to call him back LOL. I guess he could see the crazy in my eyes...

  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited September 2015

    Jen- that is great! You don't need this hanging over your head for a month. Proud of ya for pulling this to get things done the way YOU WANT. luvya gf

    image

    In the interest of full disclosure I unceremoniously riooed this off from Sula, on the pinktober revolution thread. I am getting more pissed off every day as we near 10/1.


  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited September 2015

    Kbee- congrats you are 50% there!!!

    Pulling every day for you so you can get back to regularly scheduled programming.


  • KBeee
    KBeee Member Posts: 5,109
    edited September 2015

    Thanks Katy!


    Jen, Glad you are getting it excised. You need definitive answers.

  • Scarlett152
    Scarlett152 Member Posts: 175
    edited September 2015

    Sitting in the infusion center waiting room waiting for my Zoladex injection. Having PTSD just sitting in the waiting room. I have injection followed by my 8 week check up with MO. Not sure what to expect.

  • Artista928
    Artista928 Member Posts: 2,753
    edited September 2015

    Hi ladies,

    I'm in the Sept group, well possibly Oct with a possible hiccup with insurance. Anyway, how often did you guys have to see you MO in person, not including emergencies? I'm getting AC every 2 weeks for 8 weeks and Taxol weekly for 12 weeks. I'm trying to do the math with $s and would appreciate getting an idea in general of how often one actually has to see an MO during chemo. Thanks and best wishes!

  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited September 2015

    We got your back, Scarlett. You aren't going through this alone!

    Artista, I saw my MO before every infusion. Some ladies I think saw PA's, though.

    Katy, Thanks for the Cancer Card LOL- I kind of did pull it when I called my surgeon back. "well...um...I have been through so much and GET THIS FUCKING THING OUT OF ME I DON'T CARE WHAT IT IS OR IF YOU THINK IT ISN'T ANYTHING I WANT IT GONE RIGHT NOW!!!!!!!!" or at least that's what I said in my head while I was talking to his nurse. So I get it out Monday at 4:15. (bambie eyes, batting eyelashes)...its called advocating for your self. I learned it from you all, especially Kbee. .

  • Artista928
    Artista928 Member Posts: 2,753
    edited September 2015

    Thanks little blue--- ..even before Taxol, before every infusion? I don't have any medical concerns and it seems therefore they'd be monitoring the lab work all of us need to have done routinely so I'm hoping there's a way it could be less. The 12 x before Taxol would set me back financially for cash. It's either I get to stay with the infusion center I really like and all my providers are and have been from there but MOs around here don't take my insurance or I go with the 1 that does take my insurance here but is a crappy MO just to get the infusion center I really like. Where my MO is while she is great, the center looks like a dump. This one near me where I've had everything done at is very classy and modern. So getting treatment where my MO is out over there. I'm trying to see if my MO can send the order to the MO that is at the site here and she can write that order and send it to the infusion center. My MO doesn't have privileges to send orders to the hospital here. So I'm trying to figure a loop hole, or can her and pay cash to the MO here, which is why I'm trying to get an idea of how much I would be paying for the MO here. Thanks-

  • KBeee
    KBeee Member Posts: 5,109
    edited September 2015

    little blue, so glad you advocated for yourself!

    Artista, I saw MO before every AC and every other Taxol. I do know some MOs are ok seeing you once per month during a Taxol if you are tolerating it ok.

    Scarlett, I hope appointment went well.

  • AndreaC
    AndreaC Member Posts: 220
    edited September 2015

    Hi all -

    Littleblue, good for you, getting the "thing" removed...if it gives you piece of mind it is worth it.

    Jackbirdie, I love the cancer card! I play it at every opportunity. People tell me it's getting old, but I reply that there has to be some concessions to going through all this.

    Lynne, my RO has never said anything about cornstarch...she just talks about moisturizing. I do have a bottle of baby powder which contains cornstarch and have used it a few times under my arm where it's quite sore...but the area needs moisture too so if I add lotion as well I end up with paste. So I am trying not to use the powder unless I wash it off before applying lotion.

    Re the little film I was in - apparently it will be on YouTube or something like that "soon". I will let you all know when it is.

    So I am nearing the home stretch - only 5 more rads to go! I had a bit of a meltdown today when I saw the RO. I didn't intend to, but I told her about my headaches and started crying and couldn't stop. I think everything is just hitting me all at once. I have been strong up till now but honestly, I don't know how much a person is supposed to take. Colon cancer followed by surgery and chemo, then bilateral breast cancer followed by double mastectomy, chemo and radiation. Then excruciating migraines, followed by near constant tension headaches. All this within the space of two years. I am also getting anxious about finishing treatment...I see my MO on Tuesday but then I will be cut loose and on my own without the safety net of the cancer clinic. I know I will be followed closely from here on, but it's still scary.

    And my Ativan is at home (I'm at my mom's). I have one that the RO gave me to take tonight though. Getting tired of being dependent on pills though.

    Andrea


  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited September 2015

    Artista- it's worth asking if the MO office you want to go to has a financial aid office. Mine did, and they worked with me to find some foundation money to help with copays and costs and stuff my insurance didn't or wouldn't cover. Beyond that, they also offered me long term interest-free terms for the rest. It is well worth talking to them about minimizing visits that "generate" office visit billing.

    I had blood work every week. No doc or PA. Every 3rd week I had an infusion, and saw either, alternating, the doc or PA/oncology nurse. That's just how it was with mine. I felt it was necessary because monitoring trends in your blood work, your weight- which could alter dosage, and managing SEs, all happen during those appointments. I would look around for some help. I wish you good luck with this. You shouldn't have to worry about money and cancer at the same time. But many of us do, tragically.



  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited September 2015

    Andrea- you have had way more than your share. I'd look into getting a gross of those cards printed. I'm so sorry. I could feel the pain and frustration in your words. Sending a hug. Wish I could do more.

  • Addie29
    Addie29 Member Posts: 307
    edited September 2015

    hi ladies I'm feeling pretty good today. Just some soreness more on the right side. But nothing I can't handle. And Jen I'm glad you're getting that taken care of. You have to be your own advocate. If I hadn't who knows how my cancer would have progressed

  • gkodad
    gkodad Member Posts: 188
    edited September 2015

    Congratulations on the new foobs, Addie. Good, safe ones that won't try to kill you.

    Andrea, my neighbor was going through a divorce when she had breast cancer and her husband had dumped her off the insurance while they battled it out in court, and she couldn't afford the COBRA. She talked to the financial aid office and they got her into a program that helped pay her costs.

    Lynn, when do you stop adding the "if I'm here" mental statement. I don't know exactly when but you do stop. I'm doing it again on occasion, and it does annoy me. But my approach is to take it one day at a time - when I get up in the morning, I know life is uncertain and lots of things could kill me...the garbage truck may run over me, I may slip on the wet lawn and break my neck, I could choke on a chicken nugget, etc, etc but I don't spend any time worrying about things I don't know about. Since I know for sure I won't die of breast cancer tomorrow [or Saturday or Sunday.], I give myself permission to not worry about that either. Just save it for another day when there might be something I should worry about . I call it the "Scarlett O'Hara" approach, which is really not as frivolous as it sounds; giving yourself permission not to worry is quite a powerful affirmation.

    Should have had rad 18 today but a thunderstorm knocked out power and they sent everyone home. Fortunately not getting radiation at the time, which would have been freaky. Of course, it would have been a good addition to my cancer adventure novel, or my breast cancer board game (still to be invented). So I'm on #17 and no one has mentioned cornstarch. I agree that cornstarch with all the lotion would be like being wrapped in pancake batter.

  • Positive_spirit
    Positive_spirit Member Posts: 218
    edited September 2015

    Scarlett, did everything go okay?


  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited September 2015

    Artista, I did dose dense at a small hospital, so yep, every time. Sounds like it's different for everyone.

    Yay for safe boobs addie! I know. We have to advocate so hard, because doing it in the first place is what saved our lives!

    weird question, is it possible that a suture would not show up on an ultrasound? Because the end of my scar where the proverbial lump is is blue under the skin....as if there were something black like suture lodged under there. Sorry to keep obsessing on this. Ugh. I have a meeting that competes with my excision on monday. A very important meeting. Sometimes I hate my life.

    Big hugs to everyone. Someday this will all be a bad dream!

  • lovlilynne
    lovlilynne Member Posts: 405
    edited September 2015

    Artista, I had dose dense AC then Taxol and I only saw my MO 2 times, once on 1st AC, then once before Taxol. I saw a PA before all the other infusions. And, of course I saw MO for first consult, and about 2 weeks after I finished, etc. That sucks about your insurance, I hope it all works out for you.

    I hope I didn't give the wrong impression with my question - I am not obsessing about not being her, I don't think about it with every action - it's more when something in the future is brought up. I just hate to think negatively if that's what it is, but I'm no Pollyanna either, so I guess I'll just have to own it.

    Andrea, sorry about your meltdown. You were due. I think if I were in your situation, I would be having one at least every other day.

    I'm crazy busy - DD1 and DD2 have birthdays on Sunday and tomorrow respectively. DD2 is going to be 10 so last kid party tomorrow night. My mother's bd is 9/23, so since DD1 turned 1, I've been having a family cook out to celebrate the birthdays and my mom's bd. I was going to take it a little easy this year - I saw a Amazon local deal for a "tailgate" catered, and I bought it, but when I called, they couldn't do this date :-( So, I'm doing most of the food, drinks, dessert. I made cupcakes tonight, the Swiss meringue buttercream, and started home-made chocolate ice cream. As usual, DH is being no help at all. But, DS is home from school for the weekend, so I'm putting him to work tomorrow.

    Speaking of work, I went back PT this week.. Whew. I'm tired.

    G'nite,

    Lynne

  • KBeee
    KBeee Member Posts: 5,109
    edited September 2015

    Andrea, I hope they do not just cut you loose. I hope they keep a close eye on you.

    GKO, I think rads during a thunderstorm would be freaky. Frustrating to get sent home though, I imagine.

    Addie, I hope you love what you see tomorrow. They will look 1,000 times more real once nips and/or tattooing are done.

    Jen, boo about the conflict. I do not think a suture would show up in ultrasound, but it is common for the dissolvable sutures to not dissolve.

    Lynne, wow! You have a busy weekend. Superwoman!!!!!

  • Artista928
    Artista928 Member Posts: 2,753
    edited September 2015

    Thanks KBeee and Jackbirdie- I'm calling tomorrow to find out at least the cost and if they have assistance. The problem is it's not her practice but a group. So she can be a sweetheart but the group is the one that has the rules. So we'll see. I can't tell from their website as nothing about payment is discussed. Sneaky.

    And yes, thanks for the info on the Taxol and how some oncs will do every other wk or once a mo. That would really help me as the more I've sat on this thing, the more I see I'm going with her. I doubt my current onc can fax the order to her and she with her name on to the center. There's liability there and who's responsible if something comes up. So while my bs will call this onc to see if she's heard of such a thing and if there are cash plans, I'm thinking Wexler will be out unless there is a way we're not thinking of in which they can go around to make it work. Just when I thought things were going smooth, today happened.

    No way am I going to that center where Wexler is. Not worth the commute after seeing it's dingy and looks like it hasn't been cleaned since the 70s. I got the tour of the center here and it's modern and nice and so are the people so just need to see how I can make it work to where if there is no way around it, that I'm not as broke. sigh.

    Thanks!

  • GingerChi
    GingerChi Member Posts: 252
    edited September 2015

    Artista: I saw my MO before each AC, then weekly for the first several Taxol's....then she changed to seeing me her every 2 weeks. She gives me a physical exam when I see her, discusses any SE I'm having, along with reviewing my labs. Research co-pay assistance programs if the MO's office doesn't have anyone to help you do that. Hope everything works out for you!

    Steph, hoping all goes well for you on Monday!! Let us know how are you are when you can...how long will you be in the hospital?

    Good for you littleblue, glad you'll have answers soon...waiting a month made no sense! Did you have to reschedule your proceedure?

    Lynne, most of the time I feel like I will beat this, but wonder how the SE of chemo will affect me as years go on. Other times I get scared by my HER2+ status and wonder some of the same things you mentioned. Mostly right now, I'm like gko...I do a great Scarlett O'Hara! WOW, busy days ahead for you...good luck!! :)

    Andrea, you've been through alot....I can only imagine how tired you must be of all of this. I had migraines after my hyster years ago, and it was totally draining. I know the headaches are only one part of what you're dealing with now...I hope they resolve so you can start feeling better!! Congrats on being so close to DONE with rads!

    Glad you've had a good day Addie! Keep it up over the weekend!

    Jackbirdie, I want one of those cards too! :)

  • Addie29
    Addie29 Member Posts: 307
    edited September 2015

    Kbeee actually I got to keep my nipples. So no tattoos or recon for them:)

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