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The Hermit Club

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  • camillegal
    camillegal Member Posts: 15,711

    Call it---LIES MY MOTHER DIDN'T TELL ME--Markat

  • CSMommy
    CSMommy Member Posts: 58

    Hi ladies! Just wanted to pop in and say hi. I've been a hermit in person and on the internet. It's taking me a bit to catch up, but just wanted to check in. Going in for Taxol #5 tomorrow.



    And I hadn't even thought of October being "that" month. I'm having my surgery in October, ain't that a b!tch of timing. I couldn't agree more with my disdain of all things pink. My diagnosis fell just before the walk this year; I had a "team" that walked in my honor. I wasn't able to go because of my immune system being trashed, but apparently it was all rah-rah-rah and cute. I quickly found out this isn't all rah-rah-rah and cute. It's ugly. Really fricking ugly.



    And add me to that 30's club. I was diagnosed at 39. Before diagnosis I was dreading my 40th birthday. When it got here, I actually wanted to celebrate. I hope I have a ton more.

  • markat
    markat Member Posts: 502

    A few people asked me to be on their walking teams, and I declined. I didn't feel good and I wasn't a "survivor" yet. Survivor bothers me too, but that's just me. As my husband would ask, "well what DO you like", lol.



    I went out tonight with friends. It was horrible. We went to happy hour where a lot of people I know hang out after work. Maybe it's because I was sober, but they were so annoying!

  • CSMommy
    CSMommy Member Posts: 58

    So sorry you had a horrible night, markat. I know the last happy hour I went to I was a bit annoyed listening to other people complain about their problems, and thinking"do you have cancer? No? Then just shut up". I think I've become a bit self-absorbed and intolerant of petty things.



    And yes...the survivor thing...the walk was right after my first chemo treatment. I've got this tumor still in my body, I haven't survived crap yet. What made me sad was my son walked in it for me with his grandparents, they even made a sign for him that said "I'm walking for my mom". :'( He asked me the other day if we can walk it next year, because he wants to walk it with me. Oy.



    My husband has gone to every infusion with me (with the exception of one when I took my mom). He's gone to nearly every doctor's appointment. He knows the nurses just as well as I do; I think the sweet coffee cart lady has a bit of a crush on him because he's so sweet to her. But I decided the other day that the poor guy needs a break, so I asked a good friend to go with me next week. Part of me really wants her to see the ugly side of cancer. I've told her a lot of what I'm going through with the SEs, so I feel comfortable taking her to the doc appointment with me. There's going to be a lot of talk about bowel movements, so hey, friend, welcome to cancer! But I've had so many people offer help, and then not do crap. Put up or shut up, right?

  • markat
    markat Member Posts: 502

    Oh my goodness, your son walking for you made me tear up. That is probably the only way I would do it! If one of my girls wanted to. This whole cancer thing has turned me into a crazy helicopter mom who wants to fire the dentist when he talks sternly to my kid. That probably has something to do with my hermit-ness.



    Your husband sounds so sweet. It would probably be good for your friend to see what you go through. I had to have different friends take me in shifts because I was there for 6 hours each time :( My husband would come after work and then leave to pick up our girls. Geeze it's been a long year :) Maybe I should embrace survivor for now.

  • CSMommy
    CSMommy Member Posts: 58

    Six hours? Wow...that's a long day. I'm on Taxol now, so it's only a 2-hour infusion. Glad your friends could sit with you. I had one infusion where we had to bring our son with us, but he was too young to come back to the room with me, so my husband sat in the waiting room with him. It was a very lonely day. But my cancer center has a kid's room with a Playstation, crayons, books, etc., so he didn't lack for entertainment.



    You are a survivor. Just one that prefers not to wear pink.



    And the pink thing really pisses me off, because before this, pink was my favorite color. Now, when I wear my pink, I feel like a walking advertisement.



    And I get you on the helicopter parenting. I'm so worried about school starting up again in a few weeks.



  • camillegal
    camillegal Member Posts: 15,711

    Oh markat not drinking was u'r problem. LOL

    And this week I've been very unhermit like I went to lunch with some of my friends--5 of us 3 having cancer so we're fine. Sat. nite I'm going to dinner with my family--siblings-- sister (cancer), brother (cancer) and other brother--so I'm pretty safe My one brother called and just said let's go out for dinner. We just do that a couple of times a year alone, our families are usually involved so I'm really doin' it up big this week.

    Oh and I went to the Dr/s office this week LOL and they called and want me back next week --my numbers are better but not right. So I'm a traveling lady for the next week. So I'm bisy but it tires me out so much--that I push to go and I never had to push to go out--I always just went.- I've become a cranky old lady.

  • CSMommy
    CSMommy Member Posts: 58

    I have to agree with camilegal on the not drinking thing, lol. Drinking people can be so annoying when you're not one of them!



    I'm happy to hear you've got plans this weekend, camilegal. It's nice to have someone that can understand what you're going through. And good luck at the doctor's next week.



    I've decided that I'm taking my son clothes shopping tomorrow for back to school. On a good day (i.e., non-cancer day) I could hardly stand the mall. But now....oh, I don't know what I'm thinking. Hopefully just hit a few stores, get in and out. I may end up going into a long hibernation after tomorrow.



    I had a Taxol infusion today. I always get the worst case of insomnia those days. Hence why I'm up, writing, and being so damn chatty.

  • camillegal
    camillegal Member Posts: 15,711

    CSMommy---u r brave going to a mall, I never could--that was always such a chore for me--but I can't believe the kids are going back to school soon--it seems like they just started summer. I'm in Ill and this summer has been ubusually awful--hot stormy and humid--it was hard to even go out in the yard--so staying in wasn't an option it was a nessecity which doesn't help pushing me out.

    And I to usually have insomnia, I think its SE from Aromison then I'm always tired---I can't win.

  • CSMommy
    CSMommy Member Posts: 58

    I may end up hitting one store and saying forget it and bailing. It's going to be interesting, that's for sure!



    I can't believe school is starting so soon, either. This summer has flown by. And it hasn't been a fun one at that, which makes me feel so badly for him. We usually take one or two vacations during the summer, and haven't been able to. The last vacation we took is when I found my lump. I found it on the first night of vacation while I was taking a shower.



    Can't blame you on wanting....nay, needing...to stay inside during the humidity.



    I have insomnia the first two nights after infusion, then I sleep for two straight days. Then want to sleep for a couple days after that but can't because I've got to go to work. Can't win for losing.

  • camillegal
    camillegal Member Posts: 15,711
    csmommy--u have alot going on--when u have kids it's got to be so hard on u and all of u to take care of everything u have to--I don't know how u do it. I never could. It amazes me--I'm alone so it was much easier on me everything is--I don't have the responsibility u have. Ohhhh good luck
  • Jinkala
    Jinkala Member Posts: 133

    I haven't been inside the mall for a few years now.   Shopping tends to frustrate me if I can't find everything I'm looking for fairly quickly.  

    That reminds me, I am going to have to go do some shopping soon to get some of the stuff I wanted to get before I start my Chemo next week.  Bleh. 

  • camillegal
    camillegal Member Posts: 15,711

    oh Jinkala I feel for u.

    The last 10 yrs I've done my shopping with TV or catalogues--never go to malls--I hate them, always did.When I realized I could do it other ways I was thrilled and even do all my presents that way and veru good quality and different things and I wait for sales. Love it.

  • kltb04
    kltb04 Member Posts: 234

    Hi ladies...I have been out and about the last few days so haven't been on much to post.  Got the school supply shopping done and with 2 girls, it was more expensive than it had to be.  After all, who wants the 50 cent black and white composition notebook when the $1 one has cute designs all over it.  Or - on a more expensive note - why get the 1.97 plain colored binder when the $5 one has peace signs and flowers?  Ugh, I am a sucker. 

    camillegal - my mom is the ultimate online shopper as well.  She is also the ultimate online return-er!  LOL.  At Christmas she buys for 5 grandkids and when she doesn't know exact sizes she just orders duplicates of things and returns what she doesn't need!  Sorry you have to go back to the dr next week.   :(  Have fun at dinner Sat night.

    Jinkala - I don't really do malls unless it is something I need.  I was never one to just go to the mall to wander around and window shop.  About your chemo, just be prepared with lots of liquids and foods you think you might be able to eat, meds just in case for either the big D or the big C (don't take anything beforehand.  I was sure I would be constipated and took stool softeners.  OOPS.  Had the opposite problem), and antinausea meds your dr will prescribe.  The Taxotere doesn't have bad nausea SE (from what I have read/experienced) but I don't know about carboplatin.  Are you going to be gettting Nuelasta or Neupagen to boost your counts after chemo?  If so, ask in advance for pain meds JUST in case.  Or at the last have OTC pain meds available.

    CSMommy - I have bought the supplies but not a stitch of clothing yet for back to school.  My girls have to try on EVERYTHING.  The older one is very picky and in between girls sizes and older sizes and the younger is going through that stage where she is getting a little chubby (my older one did at that age too - 9) and all the clothes these days are built so SKINNY.  She isn't big enough that she can wear plus sizes but jeans and such are so uncomfortable on her.  Sorry for the sucky summer...I can't believe school is nearly here either.  I bet if you ask him, the summer isn't as bad for him as you think.

    markat - sorry your night out sucked :(  I hear you on the helicopter mom thing - I think I overcompensate the mom with cancer guilt by wanting to be there, do everything they want to do, protect them from everything.  Probably why I spent too much money on school supplies, lol.

    I have been a busy bee this week - dr appt with BS Wed.  Surgery will be end of Sept/beg of Oct (oh great, pinkness), then we went out to eat that night and did the school supply shopping with the youngest (oldest was with a friend).  The next day I took the girls for haircuts and more school supply shopping and out for frozen yogurt.  It is so hot and humid that running errands is even miserable!

  • markat
    markat Member Posts: 502

    Oh school supplies are crazy expensive and mine are still in elementary school! I did that shopping last week. They both wear uniforms so I just ordered all their pants and shorts. I still have to get shoes and new hair accessories. They can't seem to keep a headband or hair tie for longer than a week!



    We had the kids golf program this morning and soccer practice tonight (grumbling for Friday night practices!). I have my exchange surgery Monday so I'm trying to get things done and ready for school to start the week of the 13th.

  • Jinkala
    Jinkala Member Posts: 133

    Thanks for the advice, kltb.  I'm planning on bringing just a mix of different snacks to see what I actually feel like eating.  I also post on a Diabetes forum where the "big D" refers to that so it took me a minute to realize what you actually meant. LoL   I plan on getting the Immodium and I already have the stool softeners left over from my surgery (was on Norco).

    The nurse at the orientation said that I will be taking (self-injecting? ugh) Neupagen starting the day after Chemo.  I will ask about the possible pain effects from that.  I have a list of instructions for various things I am supposed to take at certain times at home that I will go over more closely when the day gets nearer. 

    I used to like window shopping.  I remember going to some stores just to look at the interesting things they had.   We (my ex and I) would almost never buy anything and I think it was partly just an excuse to get out of the house and walk around.  I just don't feel like doing that anymore though.

    I didn't like clothes shopping much as a kid.  I wore boy's jeans a lot since I tended to wear out the knees in anything but the toughest material.   I do remember having to move up into the small women's sizes as a pre-teen though and that wasn't much fun since I still liked wearing kid style clothes but the large kid stuff just didn't fit right.

  • CSMommy
    CSMommy Member Posts: 58

    Clothes shopping is done. I'm exhausted. Kid's exhausted. He's a boy who can't match a shirt and a pair of shorts to save his life, yet all I heard today was "But Mommmmm, that's not my style!". You're 7! You're style is anything without holes in it! It's a good thing I don't have any hair because I would have pulled it out today. That, coupled with the meltdown because they didn't have the angry birds backpack we saw online....oh, what a day.



    I've yet to buy supplies, because I have no idea what to buy. They're supposed to send a letter home, but we haven't received it yet. Here they have you buy the supplies, then they basically put it in a pot and the teacher pulls from it during the school year, so your kid doesn't get what you send them with. I guess the good thing is that I can get away with buying the cheap generic notebooks because it's not the one he'll end up with anyway.



    Markat...am I reading correctly that your exchange surgery is this upcoming Monday?







  • markat
    markat Member Posts: 502

    Yep CSmommy, this Monday. I *think* it should be fairly easy. Since I had neoadjuvant chemo, I am able to get the exchange after 3 months.



    Cami hope your doing good. My tamoxifen gives me terrible insomnia.



    Jinkala if it makes you feel any better, the Neupogen shots are supposed to be easier on your system than Neulasta. A lot of people say that taking a Claritin the day of your shot, and a few days after is supposed to help with bone pain. I just used pain meds.



    Kltb the humidity has been excruciating this summer! Push for a Sept surgery to avoid the jam packed offices in Oct :)

  • camillegal
    camillegal Member Posts: 15,711

    MARKAT---I know nothing about that surgery but I know u'r going into it with a great attitude--so to me that'sgreat. As soon as u can let us know.

    CSMOMMY--I'm crackin' up with u'r post--iI know u'r exhausted but it all sounded funny to me. My dgtr had to look everything up on the computer to find whst they need for school and they do the same thin just put it away for when they need it and anyone could get anyone's. There is so much stuff to get now--she gets some every week---but she loves to go just to go shopping for anything??? Not like me.  Your son--It's not my style cracked me up really.

  • Jinkala
    Jinkala Member Posts: 133

    Markat - from what I've read, if you don't have TE issues and make it through all the fills, the exchange itself usually goes very smoothly.  I hope you find that to be true in your case as well. :)

    My paperwork says that the Neupagen is to be given every day for 7 days starting the day after chemo.  Is that the way most people have it?  I will ask them about the Claritin.  I try to be good and clear everything with the nurses or the Onc before I take it.  I'm usually pretty good with pain though so I may just try to go it with the Tylenol to start with.

  • bedo
    bedo Member Posts: 1,429

    I have always been a bit of a hermit. Since I work full time I must be alone most of Saturday.  A friend has become a royal PIA because all she.s talked about for the last year is her "chronic lyme disease" even though she's never had the correct test to diagnose it and how she can't go to work because of her Epstein Barr and now last night she's trying to get disability for the Fibromyalgia she says she has, as of yesterday.  I sympathyze if someone really has a disease, but based on what she's told me, she doesn't. Geeze, wouldn't she rather be well? I can't deal with her anymore  I almost told her, "your forgot hypoglycemia." Instead, I told her, "try stress, that's why you don't go to work. I got disability 10 years ago when I had a form of chemotherapy and last year after surgery and radiation for breast cancer. "Didn't faze her, went on yabbing. Don't think I'll be seeing much of her. Can't have people in my life who are negative and a drain. Sorry, rant. Hot. Bad mood.

  • camillegal
    camillegal Member Posts: 15,711

    Hi bedo now why do most of of know someone like that. I heard about someone having their tooth being pulled for 2 weeks--it was so horrible and took only 30 seconds to pull it. and then had to take antibiodics after such an ordeal. LOL Of course I felt bad for her, but 2 weeks. so again most of us know, but u'rs is worse to many things going on really.

  • markat
    markat Member Posts: 502

    Yes, that shot is given for a week. I think it's like the Neulasta, but broken up so the SE's aren't so bad. My chemo nurse wanted me to push to get the Neupogen, but I didn't feel like fighting with insurance. I should have :( I'm actually not sure if you'll even need anything with the Neupogen. I know that "they" say that younger women have a harder time with the Claritin working for the Neulasta. I hope you sail through your tx's with very little SE's. Fatigue was my worst SE on TCH. I even asked for ritalin at one point :/ Onc said no. It was really hard for me to read some threads on here about women who never had energy issues. It made me feel like I was doing something wrong :( But we are all different and everyone doesn't feel like running a 5k on their *good* week- but some do!

  • markat
    markat Member Posts: 502

    My post was to jinkala. I must have missed bedo's post and now it's deleted.

  • kltb04
    kltb04 Member Posts: 234

    jinkala - From what I understand, it's the same as what markat said - its the same med, just given over a longer period of time.  I had it once.  After my first Taxotere, the MO didn't feel I needed Nuelasta but my WBC dropped to 1.4.  So I had 3 days of Neupagen (it had been too long since TX to get Nuelasta).  I had some SE on the third day but not as bad as Nuelasta.  The Claritin doesn't work for me.  I took it a couple times, I forgot to take it a couple times but didn't note a difference.  It can't hurt to try though!  On the self injection, I know several on my chemo board did that with either the the Nuepagen or Neulasta and said it wasn't too hard. 

    markat - good luck with your exchange surgery - I too have read it is cake compared to all we have been through.

    CSMommy - lol on your son.  My nephew is 8 and I don't think he cares what he wears.  More often than not, he is shirtless in pj pants when I see him at his house.  Indoors only though.  He is so pale he looks like a vampire ;)

    Yeah, if my kids schools pooled supplies I would be buying the cheapest possible!!  We have had the supply lists since the end of last year but I procrastinate!

    Well, I am having just another typical weekend.  Surfing the net, watching TV, doing laundry.  Planning a little vacay next week before back to school so I am researching hotels.  PS appointment on Monday to discuss specifics.  Am supposed to be getting TE's at the same time as BMX to prepare for implants.  But I still don't know about rads so I need to discuss that with him.

  • camillegal
    camillegal Member Posts: 15,711

    For so called "hermits" everyone has alot going on--but u guys have kids, so u'r forced to, I guess.

    I'm going out tonite u'd think I was going away for a week--my dgtr and I got everything ready to wear even my jewelry, so I'm not flipping out--- I wish I looked forward to this I'd rather just stay home--it's so much effort--boy am I lazy---Oh well--at least I'm having an OK day so that a good thing. And I am thankful

  • markat
    markat Member Posts: 502

    Camillegal I hope you have a fantastic night! Come back and tell us all about it!

  • camillegal
    camillegal Member Posts: 15,711

    markat u'r so sweet. Thanks

  • CSMommy
    CSMommy Member Posts: 58

    Found that %#&$ angry birds backpack this morning, so I am again in my son's good graces. Phew. But I suddenly felt the effects of chemo in the middle of the store, so we came right home and I put myself in "hermitude". Ugh...just feel like hell. Been sleeping all afternoon.



    Have fun tonight, camilegal!



    Good luck on Monday, markat. You'll be in my thoughts.

  • Sissydi
    Sissydi Member Posts: 183

    Csmommy, it's like a forced hermitude! Tried to do some yard work today....didn't get very far; back in the house on the couch!