February 2011 chemo pals

MelanieAnn - great to hear!!!!



Dogeyed where are you? We need to celebrate together!!!!

Lovin' the BRCA negative results for MAMAV!!  YAY!

Glad to hear that Dragonfly and Melanie are doing well with rads.  You guys are a bit ahead of me - I had #7 today.  I'm crabby about having to go to rads, but no skin issues at all so far.

Jen - that stinks. My nodes tested neg at surgery and then micro cells were found by pathology. I hate this rollercoaster for all of us!



Thanks for the congrats - I actually slept six hours straight last night and didnt wake up with an anxiety attack. May not last but felt great for once! I'm going for a walk before I go to work today like I used to do!

Jenn H, I am so sorry you're having more surgery for those dang lymphs, and what a pain having to leave those drains in longer... assuming you are still drinking plenty of water, I have thought it might help my boob drain faster if I did that, surgery date is still undetermined, they're supposed to call today.  I will tell my doctor to go ahead and get all lymphs all out if they're enlarged, most of them were.  I had originally told him not to, wanting to keep some to do their job, but now after hearing your tale, I've changed my thinking.  it's the ones in my arm that I'm worried about losing, really, if they could just leave one, I might avoid lympedema.  But I had adenopathy in there, probably from this lousy dental problem I had just before all this happened, but don't really know.  I'll let the doc do what he thinks is best, in the end.  I only complained early on about leaving most of lymphs when AC side effects almost made me crazy and I almost quit the program. 

Yes, MamaV and others, last chemo was yesterday, my feet hurt so bad I just laid up the rest of the day.  I also got a cheer from my nurses and a certificate!  It reads in part, "Doctoral Degree in Chemotherapy," so I am now like my father, Dr. Gregory!!  He'll just love that when I tell him.

Glad, Divine, my endless presentation helped you.  May your nerves settle and will think of you getting your lumpectomy today.  Ask them for some Valium, tell them you've been so nervous you're afraid it will affect healing.  THAT will calm nerves, but you must continue to let stress and stories out when you aren't on them, so as not to block the release of tension.

All others, I had mixed feelings about finishing chemo.  I don't know why exactly, but I told the nurse that asked me about it that the chemo room I go to is so beautiful, windows all the way around two sides that looks out on a special rose garden, and I always feel the most secure there because the RNs there are capable of handling anything that might go wrong.  At home, I tend to worry more about my various side effects.  And the side effects will come again after this chemo too, but when they go, and they surely will as they started to when I got an extra week because of problems with AC, I will probably cry big sobs in relief, just knowing that for now, anyway (early on doc had said I might have more later), I'm free.  It's the hardest thing I've ever done in my life, with the exception of when I used to drink alcohol in my 20s,and the hangovers were actually worse, I could never go back to that, one of the reasons I quit 25+ years ago.

I shall come back here for a long, long while, even tho soon I will need to go to the forum for surgery, I suppose.  I want surgery to come and go quietly, tho, that I am afraid to go that forum, however.  When rads come three weeks after that, tho, I probably will spend some time in THAT forum for rads.  For those doing rads, I have looked up and settled on a few lotions recommended, so wondering what kinds you all are using.  Thanks.  Also, for those on rads, how come some are doing three weeks instead of six, did doc give you double dose or do you know?  Again thanks.

Bye for now, and God Bless our Fuzzy, I am fearful for her now, breaks my heart.  I kept wanting to put a photograph of me when my hair was to my waist (which my nurse remembered!) just before it fell out, I was going to put it into one of these messages, but no matter how hard I concentrate, I cannot get one to come up.  And don't want to change my avatar becuz Fuzzy may return one day and she'll look for it.  She was the angel among us, altho some of you perhaps did not see her the way I did, but there was a picture of her laying on a pillow, looking at the camera, skin like ivory, feathery hair, and looked down deep in her old soul just shining thru those beautiful eyes.  Makes me cry right to think of her.  So, with that, bye bye for now, girls.  I'll check back often, and then less often, and while I will miss all of you terribly, I will never forget how much it meant to me and how important it was for me to come to these forums and find all you special ladies here, so kind and sweet to me, putting up with all my homeroom announcements.  Smile.  Love, Gail

Hi everyone,

I've been gone from the boards for a while and have had at a chance to read some but not all of the posts. 

Jenn- so sorry to hear you have to go back for more node dissection but thank goodness they found this is necessary, and you will eventually heal from the surgery, though I'm sure it's a pain in the neck.

Special K- I hope your problems ease with the sleeves and injection and whatever your team has planned to reduce the pain for you.   You will be so happy to have your surgery and TEs removed next week.  Maybe they can do the injection at the same time?

As for me, I have opted for radiation after mulling it over and reading half a dozen medical studies about benefits of radiation for post-mastectomy women with small (under 2cm) tumors and clear margins.  This is apparently a grey area but my being grade 3 with vascular invasion seems to give me a higher risk of recurrence.  So here we go.. the simulation and CT scan is this morning. Very worried about radiation risks but more worried about cancer risks.

Laura 

Hey Feb ladies!

I keep up with the posts and I read that dogeyed was worried about Fuzzy so I checked in on her. She said to let everyone know that she's ok. In her words- "Taxol is a demon" but she is done! She said she's having trouble with her home computer but as soon as it's back up she'll be back on.

I hope everyone has a great day and to the ladies just finishing- I hope your SEs get less and less noticeable every day. I'm 8 weeks out and feeling pretty good. I haven't had any migraines for the past few weeks and my neuropathy seems to be getting better too. I just wish I could say the same for my hair. =( I don't see any yet...

Christina - thanks! I just can't believe I don't have chemo this week!



Mel - no hair yet? I am hoping to see some in a few weeks - really want lashes and brows back the most!

MELANIE ANN, THANK YOU THANK YOU THANK YOU for finding out about our Fuzzy!!!  Ohhhhh, I was some kinda worried about my girlfriend, I cannot believe I had not gotten her contact info before now, a mistake I will never make again.  Ladies, if you have a good friend on these forums, get their emails or some way of communicating outside the forum, to chat with them informally from time to time, just because of this very thing.  I was engulfed by feelings of fear, remorse, sadness, and I just plain, well, missed Fuzzy.  She is an old soul and I missed her so much.  THANK YOU again Melanie Ann for being so kind as to share your info.  I am forever grateful to you for that.  I would do a happy dance, but I'm still all crippled up from side effects of my last Taxol.  Mel, you are now my angel in waiting, as Fuzzy is my angel of honor, and you thus mean an awful lot to this here girl out here trying to make it in this goofy goofy world.  

Thank you JEN for the encouragement.  You asked about your legs, and my legs are a total wreck.  I walk like I'm 100 years old, lurching and veering around every whichaway, my legs ache from top to bottom, and they are SO SLOW.  I shuffle, not walk, and I kinda lean over to keep balance.  I DO have to take Vitamin D pills given by my cancer clinic becuz it got a little low for a while there.  Perhaps your bloodwork will show this, I don't know.  But I DO know chemo FX can stick around for as long as a couple months.  I am basically exhausted, legs are the worst, neuropathy fire next.  But now, I did just do my last Taxol, so we shall see where my legs etc. are at this time next month, like where you are.

MAMAV, yesterday I was looking up on top of my cabinet-type medicine box, and my makeup bag is up there, I was gazing at the little colorful tubes for lipstick and such, neatly laying in a row at the bottom of my makeup bag, and I thought to myself, "I should get all dolled up... but not today!"  SURELY you can buy some fake lashes and glue 'em on there, and do a little fine art on your eyebrows... only thing is, I was checking out mine the other day and I DON'T KNOW WHERE THEY GO!  Ha!  I remember another girl somewhere on these forums had made a point of drawing in where they were while she still had them, and I thought back then that surely I would know.  NOT.  Oh, we will all be our beautiful selves with or without makeup, we look so good alive to our family and friends that they won't care if we look a little dusky and dark, hard to do the glam when bald anyhow!!!!   Hahaha.  Also, MamaV, husband just said to me yesterday, "Aren't you glad you don't have to go to chemo this week!"  Funny thing is, I hadn't thought about it, I get so drowned by my aches and pains and emotion from chemo side effects.

FUZZY, DEAR FUZZY, since you are really out there, thank heavens, I am glad to hear from Mel that you are done with your Taxol, it was mighty tough at the end, to be sure, certain ones have had LOTS of trouble with it, and our Forum's namesake CharlottesMama has had more than few fights with it.  I'm just glad she will be done before too much longer, and that we are already done, hard to believe, since all the way back in February we've been putting up with all these killer toxins, but at least it's telling our cancer to "Step Off" with no please or thank you.  Bye bye girls for now!  Love and more love always, GG

I actually kept most of my brows and lashes during chemo. Mine have just recently in the past few weeks starting falling out. =( I can see very very little hair on my hair. Just some slight fuzz. I can't tell if it's what I had already or anything new??? It's soooo light too! I had dark hair. No offense to blonds but I want my brown hair back. So we'll see. I have no hair growing anywhere else either so I'm not worried yet. Oh, and I tried the fak lashes the other day. After about a half hour to get them on, I really liked how they looked..but I was worried all day that they would fall off. lol. Then I'm afraid that I'm pulling out my lashes that are still there when I take them off...

And my legs killed me too after chemo. They have recently started to feel better and I've been out and about walking and sometimes jogging a little. It will get better. Yay for being done! 

Hi all - I only have the hair that did not fall out, it is growing, but no new hair except on my legs.  Does that seem fair?  I think not.

mamaoftwo - I wish I was getting my TE's out as per your earlier post.  I had the left one removed back in January after 3 surgeries to try and control the skin problems.  I have been without it (so only right TE plus left prosthetic) since then for chemo.  Now I am having the left put back in a week from tomorrow and when healed will start fills, etc.  Probably won't exchange until closer to the end of the year!  Thanks for the good wishes though!

I have albino hair too! =(

And I thought I didn't have any hair growing but I looked at my legs last night and boy do I need a good shave! It wasn't prickly so I just thought I didn't have any. At least it's white too. 

charlottesmama- I hope you get a good report!

Dogeyed Your post made me smile and then I got to the "blue and white dolphin bathrobe" comment and laughed out loud! Thanks for that.  You know, there is so much wisdom in what you say and we so easily get hung up on what we look like and fitting in. I happen to live on Long Island but I grew up near the mountains in Virginia. I tend to be rather low maintenance but I'm living in a rather high maintenance environment at the moment which gets pretty interesting during this transformation. I just can't be bothered to fill in my thinning eyebrows when it takes all of my energy just to get to Rads and go to work. I honestly think that most people are so wrapped up in their own lives that they don't notice the little things anyway. Now, they will certainly notice the big things like a blue and white dolphin bathrobe but in my opinion their thinking needs to be challenged anyway:) So I say, put on that bathrobe, add some fuzzy slippers and head to Rads!!!One of my all time favorite poems is Jenny Joseph's "When I am Old" which she wrote when she was approx. thirty. For those who don't already know it, here goes:

WHEN I AM OLD

When I am an old woman, I shall wear purple with a red hat that doesn't go and doesn't suit me, And I shall spend my pension on brandy and summer gloves and satin sandals, and say we've no money for butter.

I shall sit down on the pavement when I am tired, and gobble up samples in shops and press alarm bells, and run my stick along the public railings, and make up for the sobriety of my youth.

I shall go out in my slippers in the rain and pick the flowers in other people's gardens, and learn to spit.

You can wear terrible shirts and grow more fat, and eat three pounds of sausages at a go, or only bread and pickle for a week. And hoard pens and pencils and beer mats, and things in boxes.

But now we must have clothes that keep us dry, and pay our rent and not swear in the street, and set a good example for our children. We will have friends to dinner and read the papers.

But maybe I ought to practice a little now? So people who know me are not too shocked and surprised, when suddenly I am old and start to wear purple!

-by Jenny Joseph

Just something that always makes me smile and feel better. Dogeyed, your bathrobe comment made me think of that poem for the first time in a long time...It takes such courage to do what's comfortable and not worry about everyone else. We deserve it more than ever...