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  • Tookybum
    Tookybum Member Posts: 38
    edited July 2012

    SO I have my first MO today.  Any questions you wished you had asked?

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  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited July 2012

    Tookybum - I typed up all my questions and took my husband and daughter so we'd be sure we heard everything.  Good luck today.  You will feel much better once you know the plan of attack.

    Titan - good luck if you head to the casino!

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  • inmate4232010
    inmate4232010 Member Posts: 310
    edited July 2012

    Hello Ladies........

    Hope.....sending you all my love!

    LuvRVing and CS.....thanks so much for the shout out.  I must have heard you all the way up in Seattle.  

    I would like to say I have been AWOL because I am out doing my new normal.  In a way I have been as I have been helping out a few store owners and it has been fun but exhausting.  Friggin' fatigue!  I got no time for that!

    It is a little over 4 weeks past my last chemo and it seems that my skin mets have made a return.  I will be calling the Dr today to schedule an appointment for Monday.  I don't want to call or go or do anything but sob under my rock for awhile.  Oh well, that just is not an option and I will trudge on.  The stress is so unbelievable.  If cancer doesn't take me down the stress just might.  Maybe if I take up yoga?  Ha, who am I kidding, no way I'm that flexible anymore. 

    I did my best to catch up on with everyone.  What a wonderfully chatty group we are.

    Bernie, Kathy, CS.......you guys had me absolutely rolling.  Thank you thank you thank you.  I needed that!

    To those of you who are new (seems too many to count) welcome.  

    When I lost my hair I did not wear a wig, hat or scarves.  I rocked the bald look with my head held high and a swagger in my step.  Most people assumed that I was just brave (or crazy enough) to have chosen my new look and that was a pretty powerful boost to my ego.  So I say, get some big hoop earrings, shine up that cue ball and walk out that door (don't forget to use sun screen).  You may be pleasantly surprised!  I still very rarely have to shave my legs or underarms (admittedly I was pretty lax about it before) not a very hairy person, and it has been over a year since losing it.  I will caution about the eyelashes.  I lost mine 2 weeks after the end of chemo.  Kind of like a lovely parting gift.  Losing them wasn't as bad as when they grew back.  Those little suckers grew straight down and poked my bottom lids like a nice stiff garden rake.  It only lasted a couple of weeks but every time I blinked I looked like I had developed a tick.  That combined with no hair or eyebrows made for a pretty interesting sight.  

    Gotta go and call the Dr. and finish a cake for my friends 40th birthday party tonight.  

    Have a wonderful day everyone!  I will jump back on later tonight. 

    Love to you all! 

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  • Paintingmywaythru
    Paintingmywaythru Member Posts: 317
    edited July 2012

    Bernie Ellen...loved that joke...have to file it away.

    LuvRving...great pic! And great picks on drinks. I go to MGH for follow up care. Work in Stoneham. Hope your son wins loads.

    Yes, can I get Ann Hathaways face to?....I find as my hair grows, it goes through many weird variations on  flipping up or hugging my head. It actually looked better super short but I want my long hair back now that I can have it.

    Cocker you are so sweet.

    Tookybum...that name is so  cute.

    Riley702..good for you...and a bigger better apartment. September is not that far away.

    Having our deck enlarged. Contractor was going to do it by Memorial Day. We moved our 2 fig trees which finally started to bear figs and all the figs fell off.  If we had thought logically we would have moved them when the contractor really finally arrived which was this week. So banging going on right now. But at least by the end of the month we can fit more than 4 people squeezed together on our deck.

    Here is how my artwork is looking these days. Working on board with watercolors then varnishing them...yup a new twist on watercolors.

    Broweryl and Nora welcome to this chat. Everyone here has been so helpful.

    Inmate...where are you? Hope you are doing OK.

    I have been MIA....needing to get ready for open studios next weekend. Feels overwhelming. I finished chemo in September and Radiation in November and still feel times of exhaustion. Has that been happening to anyone else.

    Also, after chemo my bloods were fine, but now my white blood count, protein, glob and lymph# have all dropped low as has my hematacrit. I wonder what the heck is going on. Has that happened to anyone?

    Right now they are just watching it but it is hard not to be bothered by it. I noticed I am getting winded going up stairs and this has not happened to me before. Damn. I hate these things that get in the way.

    Looking forward to a trip to Asheville, NC this fall with my sister. She just bought a lot there and is planning to build a house and retire there. I am so happy for her.

    Thanks to all you wonderful women for making me smile.

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  • inmate4232010
    inmate4232010 Member Posts: 310
    edited July 2012

    Painting........wow what beautiful artwork.  Your talent is simply astounding!  Thanks so much for the shout out.  I forgot to mention you in my last post but was thinking about you moments ago.  

    I struggle with fatigue but put it down to my new busier schedule.  Once I was done with chemo I foolishly thought I could resume my previous ADHD lifestyle.  We have to remember to get our rest.  Not my favorite thing to do, but rest is an important part of a healthy lifestyle.  Oh, who am I kidding.  I have been working the last 7 days straight and that doesn't include the mundane things like cooking, cleaning, yard work, etc.  

    Off to hang some laundry, go to the bank and get ready for work.   Have a great day!

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  • JazzyJ
    JazzyJ Member Posts: 126
    edited July 2012

    Hello All- I hope you are well. Everyone seems so chatty and full of spirit this week! Must be the summer days, or not for some....



    I dont have much time since I am supposed to be working, but I have a couple of things that I need help with please.

    1) I am about 3/4 of the way to being a "Baldy Saur". Probably more than that today but I haven't removed my night cap yet. My scalp is sore and dry even though I use conditioner every day (I know, why bother!). Any recommendations on oil, lotion or other? I cant beleive how much the roots hurt when the little hair that I do have is pushed against the grain! My cute buzz cut only lasted a few days :-(



    2) My Hubby was kind enough to bring a present, a cold. I want to make sure that I am healthy for my 3rd A/C treatment on Tuesday. Any recommendTions other than the obvious increase fluid intake and rest? Any special drugs you used that won't interfer with the other effects of Chemo?


    3) I never thought I was a shy or vane person, but I am embarrassed to let my husband see my partially patchy and almost bald head. He saw me from the other room the other day and I teared up when I realized he had seen me. We have been together 20 years (married 16) so he's seen every side of me, so why is this so painful? I don't want to wear head stuff around the house because I live in FL, so will this weirdness pass?

    Hope you are all doing spectacular! I'm looking forward to getting back to my optimistic and easy going self soon!!

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  • mags20487
    mags20487 Member Posts: 1,591
    edited July 2012

    It really is an adjustment to see yourself bald much less let someelse see you.  It will pass.  My hubby looked at me and told me I was still beautiful.  He said the same when I saw my BMX scar for the first time.  He never let go of the loving gaze he gives me and he still thinks I am beyond sexy.  I say walk around "topless".  You may find that he really loves it!  Sorry no advice on the cold thing.

    Maggie

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  • JazzyJ
    JazzyJ Member Posts: 126
    edited July 2012

    Thanks, Mags. I will try the topless thing :-). Just never expected to feel so shy about anything around him. He is my best freind and so fun to be around. I know it's me, just need to get over myself.....

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  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited July 2012

    Jazzy - he'll pat your head a few times and probably like it!  I got a pre-chemo short cut (about an inch long) but when it started to go, I had my DH buzz the rest.  It felt so much better and I didn't have hair everywhere.  I used a lint roller to get the little stubbly stragglers. 

    Inmate - so good to hear from you!  And I'm pretty sure anyone would be tired with that schedule!  So be sure to take care of yourself and get plenty of rest!

    Mags - your DH is a definite keeper! 

    Painting - that picture is glorious!  I love the vividness of the colors and the fine detail.  I have many talents, art is not one.  We should meet up one of these days.  I live right off 93 near Salem, NH so hopping on the highway and making my way into Boston is not a big deal.  If you want to set something up, just PM me.  No advice on the "why" of your low levels, but I found a prenatal vitamin helped me a whole lot.  I started about halfway through my chemo and stayed on them until the bottle was empty.  I think it made a big difference for me.  I bought them at WalMart and made sure they had a hefty dose of both iron and folic acid.  And I tried to eat plenty of protein. 

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  • riley702
    riley702 Member Posts: 1,600
    edited July 2012
    Thanks, Painting, Smile. Love your newest work. What a pretty bird.
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  • inmate4232010
    inmate4232010 Member Posts: 310
    edited July 2012

    jazzy......i had my husband shave my head. it seemed less scary when he got to be involved. we got to laugh and enjoy the fact i looked different.



    i did chemo with a cold and was told no extra cold meds just rest and fluids. do ask them what they allow as it is different for each person and drug combo. also ask for extra fluids. it will be worth the extra time sitting. you may want to take your own mask and hand sanitizer. hope you feel better soon!

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  • JazzyJ
    JazzyJ Member Posts: 126
    edited July 2012

    It's funny that a few of you mentioned your husbands being part of the shave. I got a buzz cut when my hair first started falling, and my husband has asked several times about shaving my head and I've cringed. After reading your posts and looking at it from another angle, I can see how being part of it would make both of us feel less ackward, so if I have any hair left this weekend, he will get the job!

    I will ask for more liquid on Tuesday, and the mask is a great idea for me and those around me. So far, no fever! Just a bit grumpy but that will pass!

    Thanks! Wishing you all hearty laughter, deep love and peaceful comfort!

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  • JazzyJ
    JazzyJ Member Posts: 126
    edited July 2012

    Should he shave it to the scalp with an electric shaver?

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  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited July 2012

    Good Morning Ladies

    Kathy and LuvRVing - OMG, I can't stop saying that, I just cannot believe how fabulous you both look. What an absolute suprise. By far better than any male date.  You look happy and rested and oh so great.  You sneaky gals making me beg.  If I have one disappointment its that I wasn't there with you both.   I would just love to have pulled up a chair and joined you both.  Hope you didn't hang around too long though or you would both be "picked up" looking as fab as you do.  Well you certainly got me that time. And the picture is big enough to see you both properly.  Well done, you kept that secret well and surprised me so much.

    NavyMom - have you heard anything about Jen3 lately.  I managed to find a beautiful card with just the right words in it.  I'm wondering how she is doing lately.

    Titan - was Friday 13th lucky for you.  Did you win at the casino. I bet you enjoyed a drink!!

    Tookybum - I giggle everytime I type that, so cute.  I also took my hubby and daughter to the doctors visit.  My girl wrote down everything he said because I was so shell shocked and couldn't take everything in. 

    Inmate - welcome back.  Your AWOL's are getting longer, just no good.  Those frigging skin mets. I can't believe the little suckers are back again. They sure are testing you.  Bout time you had some freaken good news for a change but hopefully this will turn out to be nothing.  Sounds like you go about things like a bull in a china shop, just don't overdo things, you also need to rest a bit.

    Painting - beautiful picture.  Would just love to go to one of your art shows and see all of your work. So very clever.  Like LuvRVing art is not a talent I was born with but I do like to look at it.  Although I suppose cake making is a little bit like art work.

    Jazzyj - the reason our spirits are up is because some of our old buddies (well not old lol) have come back on to chat with us and we are overjoyed bout that.

    Don't be embarrassed to let your hubby see you with no hair.  He will love you like mad whtever you are like.  I still wear a hat (too cold to go without at the moment) but everytime I take it off my family all step back a bit because they are not used to seeing me without hair yet they were all there when it came off.   My old fellar and my daughters still tell me I am beautiful. 

    Where is my Karen lately.  Not heard a dickie bird from her. Getting withdrawals karen!!.  Alos where is Tazzy. You are neglecting me ladies lol.

    Well ladies its cleaning day.  Got lots to do and so little time to do it.  Have a great day.  Keep your chins up and smile as much as you can. Annie                     

       

      

             

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  • borntosurvive
    borntosurvive Member Posts: 213
    edited July 2012

    My husband shaved my head with the electric clippers while my 3.5 year old held my hands.  It was a family thing.  I wanted my DH to do it rather then go to a salon just incase I burst into tears.  Having my son there kept me from crying as I was trying to stay strong for him. 

    I had a "cold" throughout my first 4 rounds of A/C.  It ended up that the chemo had burnt my sinus' and they were so swollen that nothing could drain.  I had a horrible "chemo cough" and sounded terrible.  There was really nothing I could do other then ride it out until my first 4 chemos were done.  About a week after Taxol so 3 weeks post A/C, it all cleared up just like my MO said it would.  Because of the sinus burning, I had them drip my chemo slowly and back me with a half hour (at least) of Saline.  That seemed to help a bit.  The long and short is.....it may not be a cold but rather just a side effect of the chemo.  

    Happy Friday the 13th.  My DH stuck his hand in a moving machine today at work and sliced his finger tip to the bone Yell so he was good for a few stitches and an xray.  He's all bandaged and I'm sure will milk this for awhile.  Never a dull moment in our house.....

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  • Tazzy
    Tazzy Member Posts: 2,546
    edited July 2012

    Hello all:
    I have just been so busy this week knowing that I wasn't doing chemo today - woo hoo! Been out with friends, been shopping, sitting by the lake, enjoying the sunshine - and no chemo means it only gets better. But agree with Inmate... the fatigue still sucks - but it will improve.

    Welcome to the new ladies - you will find so much comfort and support and very much laughter here on this thread.

    Kathyrnn - congrats on the clear mammo

    LuvRving... great news about your son - wow!

    Kathyrnn & LuvRving.... You both look so happy and relaxed.

    Inmate - sorry about the skin mets - thinking of you sending positive healing vibes. Enjoy your friends party tonight.

    Painting: what beautiful art.

    Jazzy - I agree with what everyone has said.. your DH will love you no matter what. We have to get over our own thoughts about being bald. Took me a while before I stopped even thinking about baldness, but now I am very comfortable without head coverings. Unfortunately my hair is growing back in patches... still a peach fuzz, but in some places it is very dark and others it is grey and others still a shiny bald patch. My DH loved to rub my head in the mornings before he left for work, he said like the Buddhist monks rub buddahs for good luck Smile!! and the other day he said to me "its gonna be strange when you have hair again, I've got kind of used to seeing you with none and I really like it".

    Tookybum - hope your appt at the MO's went OK.

    Cocker: how is your neuropathy? I sure hope its getting better.   How's the old feller's cafe coming along... has he opened yet (have I missed posts??)

    Bernie & Cocker.. thanks for the laughs.

    Bornto... ouch for your DH !

    I am really sorry if I missed any ladies but I think of you all and send you good wishes. Enjoy your weekend with minimal SE's.

    I am entering unknown territory this weekend... normally every 3rd weekend has been spent with crappy SE's of chemo... not this weekend though. So tonight I think we are going to celebrate by going a little bistro on the waterfront and I will enjoy sipping a nice glass of wine.

    Love & hugs xxxxxx

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  • Gemmy1
    Gemmy1 Member Posts: 46
    edited July 2012

    Painting,

    You mentioned feeling low on energy and having a low Hermatechrit level...

    Make sure they keep a close eye on your Chrit level. Mine got very low during A/C and I fainted, woke up to my nine year old asking me if I was okay...worst day of my life. I ended up in the ER ( not a place to be when you are a chemo patient) they finally admitted me after six hours and I had to have a blood transfusion. my WBC count was fine because of the Neulasta shot but RBC and hemoglobin were very low. The ER doc actually told me " when the gangbangers come in with gun shot wounds and they have a Chrit level two points above yours, we transfuse them so they don't expire".

    Seriously ! It's Lutheran hospital not Denver general! Don't even talk about gangbangers and me in the same sentence! I was horrified. The good news is that I am still kicking and back to work as of last week! So happy about that: )

    T

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  • Gemmy1
    Gemmy1 Member Posts: 46
    edited July 2012

    Jazzy,

    Sorry about your hair. That is tough. We have all been there so you are in good company. The eyebrows and lashes were the toughest for me as they fell out after A/C and during Taxotere. I had Benjamin Button hair and no lashes or brows. I cried to my husband about it one day, saying I looked like an alien, plus I was swollen from the steroids, feeling quite sexy. My husband never liked my bald look but he was wonderful, he told me to be grateful because I was alive, being cured and my hair would grow back. I nearly choked him! He was correct, however and in hindsight, I am very grateful to be healthy. My hair is finally growing back, about 3/4 of an inch and I have maybe 12 eyelashes. Lol.

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  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited July 2012

    Jazzy - I had my hubby get as close as he could with his electric shaver.  It was definitely a "bonding" experience...as if after 31 years we needed another one...lol!

    Gemmy - the good thing is that the eyelashes come back rather quickly.  Hang in there, it will soon be a distant memory!

    Tazzy - enjoy that glass of wine and this great weekend "off".  I have found that I can't drink red wine "straight" right now, but red Sangria is delightful, so it's all OK!
    Born - ouch!  Your poor DH, what an awful thing!  Hope he heals quickly!  Every time my DH points to one of his "boo-boos" I point to my chest and say "bigger boo-boos!" Tongue out
    CS - glad you liked the picture, we took it just for you!!!  Really, it is so awesome when I have the opportunity to meet someone from BCO!
     
    CS - glad you liked the picture, we took it just for you!!! Really, it is so awesome when I have the opportunity to meet someone from BCO!  I almost teased you the other night when Kathy said she had a secret.  But then there was mention of the guy next door, so it was more fun to just let you think she had a hot date.  Well, she did but it was with me, not some eligible bachelor!
    Kathy - my son is doing really well in that poker tournament.  He's on dinner break right now, but he has made the money.  I am following him on Twitter (the only person I ever follow) and he is giving updates as things happen.
    Inmate - hope your onc comes up with a good plan to rid you of those skin mets, once and for all!  You've been through so much, it's time for a break!
    I am packed and almost ready to leave early tomorrow morning.  We are heading to Hanover, NH, where most of my family will cycle in The Prouty, a fundraiser for the Norris Cotton Cancer Center (associated with Dartmouth).  It's not where I get treatment but it's a worthy cause and 80% of their money goes to research.  I've pretty much sworn off Komen after having done the Race (???) for the Cure for almost 15 years.  Then we are meeting some friends from Kansas City and staying in a B&B through Monday.  The guys will play golf and the girls will do what we do best - shop, explore and eat fabulous food!  I am so looking forward to it - my friend Donna is a 3 time BC survivor!  She was a huge help to me when I was first diagnosed. 
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  • onvacation
    onvacation Member Posts: 1,344
    edited July 2012

    Luv - that sounds like a perfect weekend! Enjoy!

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  • fishinurse
    fishinurse Member Posts: 50
    edited July 2012

    I am thankful to be able to come to this site and "listen" to these conversations. I was diagnosed May 31st with invasive ductal carcinoma,triple negative. I opted for a lumpectomy which i had June 13th,ended up in surgery again the same day because my breast filled up with blood and the surgical incision began to open.They placed a drain in and that was removed 2 weeks later. Had my port placed this Wednesday and have 1st chemo {AC} on Monday. The guy i had been dating became "freaked out" about all yhis and stopped showing up. I had wanted to be a hospice nurse since my dad was on hospice and passed away 5 years ago and i finally got a job as a hospice nurse this february,only to receive this diagnosis,haven't worked since June 6th,Oncologist said i won't be able to return to work until dec./Jan. I love reading all of your posts and feeling connected,love all the different personalities! The financial aspect of this illness takes a toll,have no disability insurance and am paying to cobra my insurance,trying to not stress about it,instead i focus on the positives!  I find alot of comfort in coming to this site

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  • Gemmy1
    Gemmy1 Member Posts: 46
    edited July 2012

    Fishinurse,

    Wow, cancer stinks! Men can be jerks. I always want to hit people who tell me this but, this too shall pass. I wish you didn't have to go through this and that life were easier. You will emerge from this so strong, you will amaze yourself! The women on this thread have been where you are and will be here to help you fight through this. There are financial assistance programs for BC patients too. (Cobra is expensive) I'm praying for you.

    T

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  • BernieEllen
    BernieEllen Member Posts: 2,445
    edited July 2012
    A man went to the doctor's for a check-up, and his wife came along.

    After the exam, the doctor called the wife aside and said, "Your husband has a very serious disease which can be aggravated by stress. You must follow a certain regimen, or else your husband will die. Each morning, fix him a big, nutritious breakfast. You must always be pleasant and do everything to keep your husband in a good mood. Don't overwork him. Don't burden him with your problems. Most important, make love to him daily...twice a day on weekend. If you do all this, your husband should regain his good health."

    Afterward, the husband asked the wife, "What did the doctor say to you?"

    She said: "The doctor says you're going to die."

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  • BernieEllen
    BernieEllen Member Posts: 2,445
    edited July 2012

    Men are like a fine wine. They all start out like grapes, and it's our job to stomp on them and keep them in the dark until they mature into something we'd want to have dinner with.

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  • BernieEllen
    BernieEllen Member Posts: 2,445
    edited July 2012
    Baby Calva at 9 months - she's on the left
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  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited July 2012

    Aren't the marshmallows simply gorgeous?

     

      

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  • mags20487
    mags20487 Member Posts: 1,591
    edited July 2012

    Welcome fishinurse. Sorry you had to join us but you will find comfort and support here whenever you need it.  You may find that others in your life are also just too selfish to deal with your illness and may depart as well but understand that those who matter will be there for you.  You are stronger than you know and by December you will realize how strong you were all along.  You can do it sista!

    Maggie 

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  • LRM216
    LRM216 Member Posts: 2,115
    edited July 2012

    Just want to wish you all a wonderful weekend and say hello to all the newbies that have joined this thread.  It saddens me to see that this beast of a disease never seems to take a damn vacation, and that there are always new names added just beginning the journey we have all had to take.  I do keep up with all the posts, but have just been so busy raising my grand-daughter, working and always attempting to dance as fast as I can so I don't stand in one place too long, I haven't been posting as much.  I guess I think that a moving target is harder to hit with "the bullet" than one standing still, lol!  Be well, and to all those just starting out, know that you are in good hands by being a part of this thread.

    Hugs to all,

    Linda

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  • fishinurse
    fishinurse Member Posts: 50
    edited July 2012

    Thanks Gemmy and Mags! Ikeep feeling like i need to be productive with this time,people keep telling me how "lucky" i am to have the summer off,do they not realize i am not getting paid and the bills keep coming in? I have worked since i was a teenager and now i have all this time on my hands. I tell myself to journal but,when i sit down to write, what i write is dull in comparison to what i am thinking. I feel great lonliness sometimes,betrayed that my boyfriend could actually depart at a time like this! I wonder if i will ever meet anyone who can overlook the scars.  I am usually quite positive and focus on the blessings instead of the negatives,

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  • Gemmy1
    Gemmy1 Member Posts: 46
    edited July 2012

    Fishinurse, you will meet someone wonderful. Right now, you need to focus on YOU! You are the most important person in your life. It is OK to be selfish right now. Do nice things for you everyday. You're a nurse for crying out loud, you have the rest of your life to do nice things for everyone else. This journey will allow you to be even more compassionate and empathetic toward your future patients. Don't worry about $ if you can help it. Also, take help that people offer, rides, groceries, meals, help cleaning your house. This was tough for me but it helps tremendously.

    BTW I really think that when men see breasts, they don't notice the scars, they just think, how can I get my hands on those. Lol

    T

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