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

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

    Renee, I am so sorry about you FIL. I have also been having thoughts about the length of my life. I try not to go there, but some days it's harder than others.

    Littleblue, I am still taking Zantac. Last time between chemo and tamoxifen, I had heartburn and reflux so bad I ended up at a GI doc who did an endoscopy and put me on Protonix. I prefer Zantac, but take Protonix if it is really bad.

    Andrea, Enjoy that pool party!!!!! I hope the headaches stay away.

    Addie, Glad you are down to 2!!!

    Alibeths, I hope the fatigue eases.


  • DizzParkMom
    DizzParkMom Member Posts: 316
    edited August 2015

    Renee, so sorry to hear about your loss. I know that it's a relief that he's no longer in pain, but I know that the loss is never any less painful for loved ones.

    Addie, for my hot flashes my naturopath has pushed me to get enough EPA (1500mg) from fish oil and 2 tbsp of ground flax. They were pretty bad during AC and really effected my sleep. Knock on wood, they've pretty much gone away since I got on board with the EPA and flax....or maybe it was the switch to tax/carb.

    So many messages I have wanted/needed to comment on, but haven't. Neuropathy is catching up with me. The tingling turned into some numbness in the pads of my fingers...and now I have that smashed fingertip feeling I have read about. It's hurting to tap out this msg on my phone. So sad and disappointed that the l - glutamine doesn't seem to have done it's job...nor the icing. My nails still seem fine, but from what I see recently with some of you, is that they may turn on me yet.

    I am so tired of awaiting my next body part to malfunction. Next tax/carb in Monday 8/24. Last one isn't until 9/14. Just when I thought I could see the light at the end of the tunnel, I may have been mistaken.

    Apparently my hair is what makes me recognizable. I had someone reintroduce themselves to me yesterday. Rather than awkwardly tell them that they know me and I know them, I just reintroduced myself. And then they told me they would pray for me. And then I said a prayer for them and their poor memory.



  • ankledolphin
    ankledolphin Member Posts: 99
    edited August 2015

    ((hugs)) to everyone who needs.....

  • Scarlett152
    Scarlett152 Member Posts: 175
    edited August 2015

    DizzPark - I ran into someone at Labcorp waiting room who I know socially and through our kid's school. She looked right at me blankly when I said hello. After 2 minutes of sitting across the too from me she said, "omg, so sorry I didn't recognize you!" Did I mention I have kept my hair with cold caps! So basically I look like such sh*t and haggard from chemo that I am up recognizable even with hair! I feel like I've aged 10 years from this process. Not a good look!

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

    Mayo recommended Vitamin E to help with hot flashes, but you'd have to wait until after chemo since it is not usually recommended during chemo.

    I have had several people not recognize me; I don't always mind that though! On the other hand I have people tell me ALL THE TIME that "I saw you out walking." I do walk often and it is a pretty busy road where I walk my first mile, but I did not know so many people recognized me. I guess being bald and wearing a bright orange hat makes me more recognizable than I thought!!! Some days I wish I could just put on an invisibility cloak before my walks!

  • Rpayton
    Rpayton Member Posts: 235
    edited August 2015

    Georgi61 good to know I'm not alone in the nail problems. Yep mine got bad 2 weeks post chemo too. That gift just keeps giving. Ha-ha.

    Kbeee I know what ya' mean about wishing to be invisible. Of course it is when we look our worst we are recognized. Geeeesssh

    ankledolphin hugs back and anyone else needing one today too.

    Dizzpark mom thanks for condolences. I have nuropathy too bottoms of my feet, especially my right foot. Was talking with a patient that is on chemo every 3 weeks and she takes magnesium.

    Thanks for the condolences on my FIL. So far MIL holding her own. I think my son living with her helps. Giving her hope and someone to care for.

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

    yes! A cloak of invisibility would be the perfect secret weapon for....Post apocalypse Girl! Like wonder woman, but better. I'm getting ready to take a belly dancing class..because boobs are passe, now it's all about that base, doncha know. I'm thinking if I go pro, I'd do like a whole mad max theme for my costume, spin fire, and show my scars. That's what I think about in down time...

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

    Tank Girl, LB. Tank Girl.


  • Stephmoen
    Stephmoen Member Posts: 563
    edited August 2015

    damn't the today show just had a segment that moderate drinking can cause breast cancer..the day before my wine tasting trip I have planned I don't care Im still drinking!!!

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

    The Today Show isn't the best source of scientific information :)

  • lovlilynne
    lovlilynne Member Posts: 405
    edited August 2015

    Steph - I saw that too. All I could think was that I know that I saw a segment about 2 weeks ago that was highlighting a study that said that there was no link between moderate alcohol and breast cancer.

    I'm getting deported today! My blood work came back ok yesterday. I'm leaving in about 45 minutes to have it done - not sure how long I'll be there - it sounds like, from your experiences, that it's a much quicker/simpler procedure. But, they were asking me if I was going to take a sedative, so that makes me wonder. I told them that I didn't even have one when I had it put in, so no - local is fine.

    Have any of you used "scar sheets"? A friend gave me some in a care basket, and I thought I'd use them after they removed the port. But, I just noticed it's an 8-week treatment, so not sure how that would work with radiation.

    Lynne

  • DizzParkMom
    DizzParkMom Member Posts: 316
    edited August 2015

    Lynne, I used scar sheets after I had a skin cancer removed from my face. I had a horribly thick scar that developed. The sheets really softened it up. I got mine from a burn unit nurse I knew through son's scout pack. She said that they really make a difference in scar healing, so I tried it and was pleased with the results. I didn't even think of it for after bmx since I figured the scars will be so much bigger, but it may be worth a try.


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

    Good news, Lynne! May it go well.

  • BAT
    BAT Member Posts: 24
    edited August 2015

    Really not sure where to put this update at....

    My beautiful wife had her lumpectomy last Friday. Dr. stated that he got the tumor with good margins and a good node with some surrounding tissue. Currently waiting on pathology report and praying for good results.

  • Positive_spirit
    Positive_spirit Member Posts: 218
    edited August 2015

    hi everyone. I have been spending lots of time with my son these past two weeks and the bonding has made me super happy. My 7 year old daughter is in gymnastics camp, leaving me with one on one time with my 10 yo. We biked, walked, hiked, saw a trout hatchery, went to appointments, had breakfast out, had lunch in town...ahhhhh. We caught frogs, littleblue. Sending you some! >: o

    My deepest sympathy to you, Renee. And Ankledolphin, thinking of you.

    Congrats Lynne of being deported.

    Addie - 2 more. Walking you to the finish line.

    Now littleblue got me thinking about ditching Pilates and starting belly dance.

    Dizzpark... I wish I was in Illinois when you came in for treatment. :(

    Gingeel and Lynn...retreat? Let me know if you sign up. I just did for oct 2-4. Phew...feeling brave.

    May SE effects of chemo, rads, and all things cancer diminish for those of you struggling with this. I am still struggling with a fissure (buttache) and foot pain. My hair is growing out...and now I am thinking of having someone create patterns on the back of my head. Feeling rebellious as I transition back to work. Smirk


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

    Yay for deportation, lynne! So excited for you!

    Ksusan. Yes. I want to be her. And I want her on a tshirt...that picture ROCKS!

    Positive, thanks for the frogs lol. Sounds like you are having g a good summer. I love the idea of shaving g patterns into your hair! Do it!

    The today show can suck it. Sensationalist ic bastards. Enjoy your wine Steph! You earned it!

    I haven't had a day off in 2 weeks. I'm tired! And hungry. I need a wife lol. I missed the new young cancer support group..seriously though, who under 40 can be somewhere at 5? Don't we all have to work??

  • mamajencoz
    mamajencoz Member Posts: 52
    edited August 2015

    Final chemo crash. No more...never again. Party like a survivor. .. image

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

    mamajen, what a beautiful woman you are! Congratulations for finishing!!!!! You are awesome! Good work! Big congratulatory hugs!

  • mamajencoz
    mamajencoz Member Posts: 52
    edited August 2015

    my last chemo was monday. Oh i just cried when it was done. 16 rounds and now only herceptin which is like water compared to what ive gotten already. My family was with me to celebrate the final drips of toxins flowing in. I was ok until my 6 year old hugged me and said "thanks mom for doing chemo for me" (((sniff))) there I go again. ..

    image

  • lovlilynne
    lovlilynne Member Posts: 405
    edited August 2015

    Deportation went fine, but ouch! Started burning as soon as I was in recovery. I've been icing it almost constantly since. OR nurse said surgeon had to cauterize, so maybe that was causing burning? Discharge instructions are the same as when they put it in, which seems excessive? No swimming for 2 weeks?

  • Stephmoen
    Stephmoen Member Posts: 563
    edited August 2015

    think I need to be reassured finished chemo 2 weeks ago my neck and shoulders are sore I keep thinking it's in my bones! Had a pet prechemo that was clean it wouldn't spread during chemo...right???? Especially when it melted my tumor away..Gah I miss my old life 😞

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

    Steph, I was just thinking yesterday about how much I missed my worry free days!

    Lynne, I have my deportation scheduled next Monday and I'm scheduled to work on the engine the next night; looks like I may have to change that! Mine is being done in office. I wonder if they can cauterize if needed there!!!

    Mamajencuz, Congrats on finishing!!! You are beautiful. I love the pictures.

    Littleblue, your schedule sounds like mine lately. I am soooo tired too. Bi keep looking at my calendar to see when I can catch up on sleep. I'm thinking somewhere around mid September!

    Positive spirit, I love your idea for your rebellious side!

    BAT, I hope the pathology report brings good news.

    Today is my radiation simulation. I hope I get to see RO to ask my last few questions that the spas was clueless about. Hoping it goes well

  • ThePrincess
    ThePrincess Member Posts: 424
    edited August 2015

    Ladies - generally how soon after surgery does one start rads?

  • Positive_spirit
    Positive_spirit Member Posts: 218
    edited August 2015

    mamajencoz - so beautiful, sister! your pictures are lovely.

    Kbeee and Littleblue - I want to get back to work and be busy again. Two more weeks to go.

    Lynne - hope the burning resolves. In 2 weeks, the pool will be all your as kids will be in school! Spa time!!

    Stephmoen - yes, my back hurts and I think hmmmmm.... And then I correct myself and say "TODAY is my day!! Not a day for cancer, but a day to realize that I survived 2 surgeries, reconstruction, chemo, and so much more." You survived an amazing amount of trauma - it's time to belly dance!

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

    Princess, generally within about 3 weeks.

  • Fran2014
    Fran2014 Member Posts: 140
    edited August 2015

    mamajencoz-OK I'm balling my eyes out right now!! The pictures and sentiments were absolutely beautiful!!

    Lynne-congrats on the "deportation"-gotta remember that phrase when mine comes out in a few months.

    To everyone who is on rads and exhausted-it does get better but damn it takes a while so hold on

    Positive Spirit-thanks for being a rebel!

    Kbee- I still thank you so much for putting us all in touch with one another. I'm also struggling with trying to keep my "life thoughts" at bay.

    Update on me- the new "real but fake" boobs were put in last Thursday. So after a week or so the soreness has diminished and I appear to be healing without complications (which is a nice change of pace for me). On my follow-up visit, the PS smiled and said, "I think you will be very pleased with these"- my response- "as long as they aren't trying to kill me-I'm sure I'll love them"- Sometimes, the expression on people's faces when stuff like that comes out of my mouth is priceless!

    My hair- Well what can I say-it's growing (albeit so very, very slowly). This week I've been venturing out "hatless" which takes a bit of courage on my part. I LOVED the threads on being invisible b/c that would be great right about now.

    I'm tolerating the Herceptin extremely well. Looking forward to getting back to work in a week. Not sure what to do about the hair situation b/c I work with middle schoolers - figure I'll cross that bridge when I come to it (although I did wash and spruce up my wig just in case I chicken out).

    Getting ready to bring my son to college next week so I've been an emotional basket case. Such bittersweet feelings-so excited for this next chapter of his life yet I'm constantly getting flashbacks of him as a toddler and young kid. Gosh-time really does go by so fast.

    Again, my love to all of you as we continue on this "journey" of sisterhood!

    Fran

  • lovlilynne
    lovlilynne Member Posts: 405
    edited August 2015

    Simulation this morning, but I was too swollen, so now I have to wait and go back next Wednesday. #!&%%! I understand the delay, just do not know why the scheduler let me book an appointment the day after port removal - I told her. Grrr. On the plus side, it's not a big deal - will take less than 30 minutes next time. I did the skin care chat with the nurse - she gave me a tube of aloe-like gel. Other than that, it's corn starch. She said she was just reading a study in the latest copy of some journal that says that none of the creams, etc. make any difference. So much for the $100+ I spent on skin care products :-) And I still have to buy corn starch! I guess it will make me feel like I'm doing something.

    KB - how can you have simulation with port in? Is it the other side? My RO insisted that it had to be out first. Port site is much better today, but I have an achy arm/shoulder - I think the ibu will help. I am surprised to have it hurt as much as it did. Ice helped a lot too.

    Jen - congratulations on finishing 16 rounds of chemo!!!! Your photos are beautiful in a haunting way - you post gave me chills.

    Steph - I have had the exact same thing since Monday, and I was thinking the same thing because I had that neck and shoulder aches before chemo, and I feel like now it's back. But, I also went to the beach on Monday, and I was digging a trench - so maybe it's just soreness from that? I am so out of shape that it's probably just using muscles that I haven't in a while.

    Jen/LB - thinking of you when I saw the reports of the wildfire firefighters. So sad for the families.

    Lorraine, I don't know if you saw my note about the retreat - I have a conflict with DD's JDRF Walk. I'm trying to get her to get more info - if she is having a team, I feel like I have to be there, but if it's just family, then DH can deal with it. Of course, I have been asking her daily, and she has no answer - so I think I'm going to have to be a dick and say, "ok, so I'm going on my retreat, you are on your own for the walk" I get so annoyed that my family puts me in this position over and over again :-( That's so great that you have been able to spend quality time with DS - silver lining? Any news on the business? You'll have to let me know when grand opening is scheduled.

    Lynne



  • lovlilynne
    lovlilynne Member Posts: 405
    edited August 2015

    Fran, we must have been posting at the same time. Is this your first going to college? I went through that last year. It was very exciting and emotional all at once. DS didn't venture far from home - about 45 minutes away, but decided to live on campus (we did consider having him commute, but in the end decided that his program - game design - would lend itself to late nights and lots of collaborative projects. Well, maybe not as much as a freshman, but that was our rationale anyway.)

    I was so involved last year (but trying to be as hands off as possible). No one would ever call me a hellicopter parent, so I was constantly checking in with DS to see what he wanted me to help with (or not). This year is totally different - he is on his own! LOL, he moves in on 8/30, and DH will not be there to help, so I'll drive him and he'll have to do all the heavy lifting (to his 3rd floor room). He'll also have to get packed all by himself (he's welcome to the list I used last year). I figure that he needs to take control of his life at this point. I'm happy to help, but he's the one ultimately responsible.

    When I think of what I was doing at his age - I had started a full-time job by the time I was 19, navigating the business world, owning a car, paying room and board, etc. It makes me think that I've failed as a parent that my kids are not self sufficient.

    Anyway, just wanted to let you know that I can relate - and if you have any questions, I'd be happy to answer if I can.

    Lynne


  • Rpayton
    Rpayton Member Posts: 235
    edited August 2015

    My heart breaks for all the firefighters out there and their families. So, so horrible. God bless those of you here.

    mamajen: CONGRATS!!! Your photos are hauntingly beautiful and such a resemblance of this horrible thing called cancer.

    Lovilynne: Congrats on deportation!

    positive spirit: good reminder to carpe diem!

    Fran so many emotions when you send a kid off to become an adult isn't it? And yes it all goes so amazingly fast. Thanks for the hope that after rads life improves! I have herceptin every three weeks and doing well with that, thank God!

    Had my rads consult yesterday. Had lots of questions prepared and felt really comfortable with my female RO. I was concerned as it is my left side (heart and lung). Got reassured that the mapping with the dosimetrist and physicist are very precise now and not like the old days. She has no concerns about type of rads and heart or lung damage. As far as creams lotions, I was told nothing that has any alcohol in it as that will burn. I will get samples but RO agreed that miaderm, if wanted, is good, aloe, and aquaphor should get me thru. And some very loose, comfortable Ts or tanks to absorb the lotions, protect the skin chafing. Sounds like it gets worse 2-3 weeks after radiation is done when the itching, peeling start.. But most people do fine. So next week mapping is on the agenda for me.

    Hoping everyone has a nice low side effects weekend!

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

    This fire season has been bad so far. Last year we lost almost an entire hotshot crew. Yesterday my DH went to recover the bodies of two men who crashed their plane in the mountains near hear. Every time I see the faces of those brave men we lost, I want to cry. It's just too close to home. To much death. My heart goes out to their families.

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