2005 ROCK-TOBER CHEMO GIRLS
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Hey everyone:
Tracy (from Seattle) and I have been wondering how we could send a card or note to some of our group when we want to say "Hi!" or "Hope you feel better" and stuff like that. So, we have sent each other private messages and exchanged addresses. On one of the other discussion threads here at this site, this idea created some discussion about trust, i.e. should you give personal information to someone you have never met before? Tracy and I felt like we could trust each other and that is why we have given each other our addresses through private messages. So, we want to invite anyone else who would like to do that to join us. If you want to exchange addresses with me or with Tracy send us private messages. Don't put it here on the discussion list that anyone from anywhere with any unknown motive can read. Do it only through a private message!
I can't promise to send you a card immediately, but who knows? You might go to the mailbox one day soon and find a cheery greeting. I know that I still like to get "snail-mail" and I think most of us are like this. Also, if you want to tell me your birthday - you can leave off the year if you want - I will promise to send you a birthday card.
OK - hope you are all doing well today and find something to bring you happiness. -
AMY -
Your story at L. Armstrong's site is fabulous! I was "all choked up" - but in a good way. You truly are an incredibly courageous and inspirational young woman!
ROSEMARIE -
Your new photo looks great!
EVERYONE ELSE -
Hi there. Hope you are all feeling well.
Laura -
To all you October girls
Back in September when I found this site and knew I would be starting Chemo in October I was so scared and nervous and started the Oct Thread I never dreamed it would be such a lifeline for me and so many others. I may not write everyday but I do logg on to check on everyone, It has kept me going knowing I was not alone in this. You are all such a huge part of my life now. I have finished Chemo 2 weeks ago with the exception of 2 more days of Oral Xeloda then hopefully it will be over. I have more side effects now than a month ago, nails turning dark and hurt, Feel swollen all over, NO eyelashes and eyebrows and major Chemo brain!! I absolutly hate how I look in the mirrow and am trying to be gratefull I can still look in the mirror. -
Terynsmom - you're my hero...I hope the next few days are great ones - you deserve it!!!!
Marymelodi-that sounds like a great idea...
Taxol #10 down, yikes - I have itchy palms and feet for the first time!! It's not that bad but it just has never happened before...I see Benadryl in my near future...right before I go to bed!!! -
Terynsmom -
Hang in there! You have been through so much. I admire your strength.
Rosemarie -
Just curious...why do you and a few others here have to have so many Taxols? Is it simply up to the Onc.? Or is it because you had 2 + nodes? Hope the Benadryl works for you. Again, your photo is adorable!
Laura -
Sherry - my thoughts are with you!! I'm so happy you're done! I hope you start to feel better and back to yourself soon!!!
Thanks Laura (I'm hoping folk will focus on the child and not the ears.)
I was given a choice - I could do 4 Taxols every 3 weeks, continue on the every two weeks regimen or do weekly Taxol for 12 weeks. I chose weekly Taxol because the side effects are supposed to be less and the infusion time is shorter. I'm not sure what's the best way to do it...I have tingling in the toes, have had some bad joint pains, can't sleep and have horrific headaches...If these are minimized side effects I don't want to know how I would have tolerated it every 3 weeks with a lot more meds! STILL I'll take Taxol over A/C any day-it's just taking so darn long to finish.
I took Melatonin to help with sleep tonight...I'm wide awake and jittery like always on infusion day. -
Laura, I am her2+++ so they prescribed 12 Taxols with the 12 Herceptins. After this, I have to have Herceptin til the end of the year. I opted for a triple dose every three weeks instead of a single dose every week. I really need a break and those 2 weeks in between will allow me to take out my new motorhome with my girl.
On another note, my step dad died this week and so did my dad's mother in law. Both were close to me and I loved them both very much. Earl was 72 and died of lung cancer (he had it 2 years ago and it came back) and he only smoked about 10 years in his younger days. Olga was 92 and still had all her marbles. She was the sweetest you ever met .... she and I went to Washington DC a few years ago and had a blast .... you'd never know she was her age. -
Rosemarie ..... I have to take Restoril 7.5mg or Temzepam 15mg to help me sleep after infusion day. The dexamethason (decadron) gets me so amped. The Benadryl they give me makes me so sleepy but that effect wears off around 8 or 9pm and then the anxiety sets in so around 10 I take a sleeping pill.
Rosemarie, thanks for calling me a hero but I sure don't feel like one. I feel like my life is cursed and it keeps getting worse....like a bad movie! -
Laura..now I understand your question that you pm'ed me about.
I was supposed to have dose dense Taxol but when I got really sick on the dose dense AC and they only gave me 3 outa 4 treatments, they decided to put me on 12 weekly Taxols instead of dose dense. They also lowered the dose lower than it would have been. It is much easier on the body than the dose dense and in the end, I get more taxol in me than I would have otherwise. I wasn't happy with this decision at first. I talked to ALL the oncologists in our dept that I have contact with including the head of the dept who was my original oncologist and they all insisted it will be better for me. They were afraid of endangering my life. So, I was supposed to be done back in Feb but am finishing...TOMORROW!!!! The side effects took a longer time to develop and I basically breezed through this until the last couple of weeks. They had to up the steriods and I'm a bit of a wreck but at least I see the light at the end of the tunnel!!!!
This too shall pass.... but,like...WHEN???????????????
ravdeb -
Tarynsmom,
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(sorry about that, pushed wrong button)
Tarynsmom,
I am so sorry for your loss. Olga sounds like my Mom. She had a great life and lived it up until the end.
Ravdeb,
YIPEE for you. I am glad to hear you are at the end of your chemo treatment....Radiation is a breeze after doing chemo. I almost feel like my normal self again.
Graycie -
I forgot to mention, I got my scan results on Monday and everything looked good so I am happy about that. Has anyone else had a bone scan and CT scan after chemo? My ONC still wants me to keep the port in though for a while in case of reoccurrence. Didn't like hearing that..
Graycie -
Terynsmom - I'm so sorry to hear of your loss too! Enjoy your time off with your little girl!
Has anyone heard from MaryAnne??? I hope she's feeling ok!!!
Inlaws are coming on Friday - we're still unpacking boxes!(I'm hoping for a date-alone- with my husband while they're here!!!) -
Terynsmom - I am so sorry for your loss, it is difficult to loose one person, but two so close together is very hard. My prayers are with you. (((Hugs))).
Ravdeb - CONGRATS ON YOUR LAST TREATMENT!!! You will find that things will be much easier for you now. As Graycie said, you will start to feel normal again. I have one week of rads behind me and 5 more to go.
I have not had a CT scan or a bone scan at any time after my diagnosis. I think I will ask my Once when I see him in a couple of months, why that is? I would kind of like to know that everything inside there is fine (or maybe I don't want to know.... ) -
Tracy, Did you have positive nodes? I think that is the reason they did the scans on me.....one before treatment and one after.
Graycie -
I had 3 nodes positive out of 26 taken.... Hmmm.....
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Hi Guys,
am on Spring break with the kids. We are visiting my sister so there are seven kids from 9-16....Argggh a lot easier than when they were younger though. Spent the morning at the museum with six of them.Finally got my turn on the computer!
Feeling very unwell for last three days although a little better today. My temp is creeping up, hope I don't get sick again. I am taking Neupogen daily so that should take care of it. I realllllly hate this feeling, I so can't wait to be finished. My last tax is March28 so I guess I have one more month of feeling not myself. Then watch out , I'll be back and nothing will stop me. Right now my body is so out of shape and tired I find it hard to get around without resting whenever I can. Usually I go from one end of the day to the next, I have never gained weight before and always felt pretty healthy.
Rosemarie your new pic is great.
Terynsmom, what a hard time you are going through lately. Be careful.
Graycie good to see you feel well having finished chemo. I miss my port , they took it out last month because of fever. I have scrawny little veins and almost a whole year of Herceptin left.
Ravdeb you are done TOMORROW, WOW. That is great. Just imagine in a few more weeks you will start to feel like your old body is back. Amazing. And can you believe the time has finally passed to you saying it is your last treatment? I am doing the happy dance for you!
Fists up! -
Tracy,
OK....Hmmm is right, I guess I can't go by the positive nodes. Maybe it is just routine for some doctors to do the scans or it may just come down to the kind of insurance you have...which stinks..Actually I don't think I have the greatest insurance since I am paying $150 a week co-pays for radiation.
Mary Anne,
Sorry you are not feeling well. Hopefully you will bounce back soon and will be able to put this all behind you .....
Graycie -
I will ask my Onc what the deal is with the scans when I go for my 3 month check up in May. I thought it might be an insurance thing too. If I find anything out, I will let you know.
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Mary Anne -
I hope you feel better soon! Keep thinking about the 28th. You've had a tough time and I hope all will be uphill soon (your mountain photo was incredible).
Graycie -
I am sooooo happy your scan results came back good. I had a CT of the chest/abdomin/pelvis, and a bone scan done in Sept. which was a month after my Mast. That was about 6 months ago!, so I want to have it done again, and am fighting my Onc. about it. How's the hair growth doing? Any lashes or brows yet? I hope so, if not, they'll start soon. Mine didn't start until about 2 weeks after I noticed my hair was coming back.
Take care.
Laura -
Just want to join in the flow today. Tarynsmom - so sorry to hear of the deaths of your loved ones. I hope that your memories and the happiness you had in those relationships will be comforting and inspirational to you.
Some of you are talking about scans and tests. At my rads appointment on Monday they said the doctor wanted a new set of x-rays. So, things took a little longer. Then yesterday, they told me that after seeing the x-rays the doctor says, everything looks good. I'm not sure what they were looking for but I'm assuming it is to make sure they radiation is getting to all the right spots.
Also, on Monday the asked me to be in a research study of two alternative therapies to help with radiation fatigue. I agreed because I do think it is important to help medical research if I can. So, yesterday I was randomly assigned to a group to receive weekly polarity therapy as a help with fatigue. In addition, they are tracking my activity levels every 10 seconds, 24/7, by means of a device that is like a man's wristwatch, only it records activity. I'm to wear it for 4 weeks - even in sleep, the shower, everywhere. They also take a weekly blood test to measure some proteins that are involved in stress responses and 2 days a week I give saliva samples by chewing these cotton swabs and saving them in test tubes. From the saliva they measure cotisol, another stress related chemical. Other participants may get massage therapy weekly or they may be in the control group and get no alternative treatment. At the end, we can choose to try the other therapy that we did not receive. I have no idea what polarity therapy is, but I will find out next week.
A couple of gals have sent me their addresses and I sent mine to them. Hope all is well and if you have been feeling badly, hope it is better soon. -
Well, what could make a 6 o'clock start and a 30mile round trip in the snow any worse? A puncture thats what!!!!!!!
Luckily ( being of the sort that knows there is a spare wheel somewhere and no more) a lorry driver stopped and changed it for me - even gave me his jacket to keep the snow off - bless him!
Went to see about my free complementary therapies today - have never used any of extra services offered yet. I can pick from reflexology, aromatherapy, massage and "visualisation" ( not sure what that is!)
I have xrays done on rads because it can affect your ribs by all accounts - maybe thats it marym?
My husband has a bad back - on his way to the chiropractor - i actually feel like i can look after someone else for a change!! Dont know how long it will be before i ahve had enough tho!!
Take care everyone,
Debbie
((((((((((((((Terynsmom))))))))))))))))))))))) -
Laura,
Hair is starting to grow but I lost almost all my eyebrows and eyelashes a week ago. Isn't that weird? I thought I escaped. Nobody has really noticed. Thank goodness I was good in art and am able to pencil them on without a stencil, between the powder and pencil they look pretty good. In fact the nurse said the other day well at least you didn't lose your eyebrows. Sorry to hear your ONC won't repeat the scans. It does help to give you piece of mind. I just asked about a mammogram since I had a lumpectomy. He is sending me for one since it has been 6 mos. I think I am going to wait until after radiation is done though. I can't even imagine them doing that on my breast that is getting radiated. The mamogram never caught the tumor the first time so I don't have much faith in them anyway. I think they are going to do a sonogram also.
Debbie,
Sorry to hear the bad luck with the car but it sounds like you got lucky with that nice driver that stopped to help you.
Marymelodi,
That research you are going to participate in sounds interesting. Are you getting paid? I wouldn't mind doing that as long as you didn't have to take any experimental drugs. That would scare me. I had to wear a blood pressure cuff for 24hrs once and that drove me crazy. It never worked right. I thought my arm was going to fall off as it was forever inflating...In the middle of the night I ended up throwing it on the floor and that was the end of that.
Everyone, Take care and I hope you have a Nice Day......
Graycie -
laura,
my onc. isn't doing scans either now that treatment is over. she said that there are too many false positives, which are psychologically damaging after awhile and that research shows whether you find something on a scan (g-d forbid!) or notice symptoms, the prognosis is usually the same. she said it's just too emotionally upsetting to go through scans again, find something "weird", have another test, freak out, etc. only to find that's nothing. so, i just hold my breath and ignore random aches and pains the best i can and try to move forward.
it was interesting...my husband and i had a long talk the other night because i started crying about how i want to forget this all happened, but at the same time, i'm worried everyone will move on and i'll be left with all my fears and worries about cancer. i told him how hard it was to be a survivor sometimes. he cried too and said it's so hard to be the husband...he said he doesn't want to wear his pink bracelet anymore because then everyone sees him and thinks, "that guy's wife must have breast cancer". he said that he is constantly asked questions about me from people, friends, coworkers, etc. who don't think they can ask me something (i guess about recurrence, fertility, etc.) everyone sees me as being strong as a survivor and also fragile because of the cancer, but no one remembers all the time how terrifying it is to be the breast cancer survivor husband. we had a long cry...never felt closer to him
i get so caught up in how i'm feeling, emotionally, that i forget how hard it is for husbands, parents, etc. now that treatment is over.
love,
amy -
Amy, it sounds like you have a wonderful guy who should give lessons on how to be a supportive spouse!!
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Amy your husband sounds like a sweetie. You are very lucky to have him!
Graycie - My eyebrows fell out about a week ago too. It seems that the hair on my head started to grow and the eybrows fell out. Go figure? They have already started to grow back in a little bit.
Have a good day, everyone! -
don't worry ladies about your eyebrows falling out...mine did that too about 2 weeks after my last chemo. it's like they do that so that new hair can grow. honestly, it took one week for my eyebrows to come back. you'll get there
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Amy,
You've got such a wonderfully supportive husband with the skills of empathy that are rare in a man. YOu are very lucky. Could say it's the younger generation, could say it's politically correct to be an empathetic husband, but I think the real reason is the warm bond you have together. I hope that continues to grow and continues to be there forever. It warms my heart...REALLY!
On a different note, my brows have been thinning and growing back through Taxol. They are on thin mode at the moment and...........................
I FINISHED CHEMO TODAY!!! YAHOOOOOOOOOOOOOOOOOOOOOOO
Hopefully itching will be gone in the next couple of weeks. Hair is growing in.
I'm hyper and am up after midnight here, but will go to sleep now.
I hope you, Terynsmom, are getting through your losses peacefully and that all is well with you.
Maryanne..are you okay? What's with the fever??? hope it did not reach any unwanted heights.
I am looking forward to "normal" now that chemo is over but frankly...what is NORMAL?? I think I have a new normal and really...was I "normal" before??? I don't think so!
I do know that part of my normal is this extaordinary NOT normal white snowy hair on my head.
I was reminded by Ter on a different thread that hair should NOT be my main concern. As I write this I remember that somebody else told me this as my hair was falling out back in October. Can't remember who, but now I'm being reminded that the important thing is that I'm fighting this cancer and not my hair!!!
and so, I'm slowly removing my scarf and decided that rads will be the time that I go scarfless, at least to my treatments. Gotta start sometime! Just wonder what others will think of this snowy little covering I have as opposed to dyed black hair for the past 20 years!
Glad to know that if brows fall out they grow back right away. They are just teasing us!
Smile everybody. Life is very, very good (I can say that cuz I'm on steroids and hyper as anything!!!WHEEEEEEEE!)
ravdeb -
Ravdeb,
congrats on your last chemo!!!!! may you get back to your normal self sooner rather than later!
Amy, your hubby is fantastic... you are so right about the effect of this crappy disease on those closest to us. I think my parents have aged 20 years since my dx. I am trying to shield them from it, and would rather keep them in a blissful ignorance regarding stats, prognosis, possibility of mets, etc etc etc... But they get upset that i dont want to share with them, thinking that i am refusing their support or something... this is quite a dilemma for me. Sometimes i feel they are more emoitionally fragile than myself when it comes to me being sick, to them i am always their little girl... I just dont feel like i can share the load with them, like i would with a partner.
Anyway, glad everyone is moving on bit by bit.
Rads really are a piece of cake compared to chemo, even though i am getting burnt (got 8 to go). The rads crew is lovely, they keep apologising to me for making me uncomfortable, moving me around on a table, marking me.. I say to them, are you kidding??? this is like a holiday to me, the only 15 minutes during the day when i can relax and do absolutely NOTHING without feeling guilty!!
take care all!
Paula -
Doesn't it feel good?! I'm glad that chemo is over for you. I had my first post-chemo check up today and I am cancer free and ecstatic!!
We never thought this trip would end but its slowly winding down. Let's do the happy dance!!
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