Starting Chemo Aug 09

msmpatty

The Zometa decision sounds tricky.   While participating in a study is always the good altruistic thing to do, I think choosing the "proven" drug at this point sounds wise.  Especially for you Karen, with the triple neg! You can always switch to another one if the study shows the others are more/equally effective, less expensive or whatever.   My Onc hasn't even mentioned Zometa.  I need to ask him when I see him next week.

Weety - good luck figuring out the disability benefits.  Gosh what a mess!

Hope everyone has a great weekend!

Patty

Kim09

Weety - My understanding of FMLA is different then Jenn's.  Here is a link to the Department of Labor site.  Once there to to item 2  click on "view poster".  This is the poster that all employers are required to post in the workplace.  It has the actual requirements under the FMLA.  Some employers are more generous then what is required under the law. 

http://www.dol.gov/whd/regs/compliance/posters/fmla.htm

jenn3

Kim - Thank you for the link - even after I thought I understood it I didn't  So............... what I misunderstood was the 12 weeks, which is where they have to hold your job for 12 weeks under FMLA.  The rest is covered by the STD or LTD coverage by the employer. 

weety

I think my work makes it more complicated (although better benefits) by allowing me to take the "statutory" leave at 50% pay for 100 days.  I think (but I'm not sure) when I am out of the 100 days, I have to apply for the FMLA, but I am still uncertain.  I don't think they will allow me to go for any length of time "without pay" unless I am on FMLA.  My 100 days go beyond what my onc has given me, so now the next step is to plead with her first!  I am feeling stronger and feeling like I'm getting back to a normal life, but I'm still going to bed early, resting/napping when I can etc.  Once I go back to work, I will be getting up at 5 am, dealing with the high energy level of 5 year olds all day, not getting any rest or naps, going home to pick up my 3 kids, feeding them dinner, doing homework, getting them all to bed, and THEN doing all my lesson plans for the next day before I can get to bed!  I am exhausted just typing it all out!  I hope my onc will give me longer. 

How long did you all get from your oncs beyond the end of chemo?

Kim09

I worked through my chemo but I never had bad SE's.  Plus I have a desk job and could work from home when necessary.

Lilah

Yeah I also worked through chemo -- but except for one day a week (occasionally more with meetings and such) I work at home so was able to sleep when I needed to.  I also don't have any kids.  That's tough Weety -- dealing with small children, chemo / BC AND work!

Lilah

msmpatty

I also have worked throughout chemo but I own my own business so my schedule could accommodate the down days.   And overseeing a 13-year-old is a lot easier than three younger ones.  My heart goes out to you Weety!  Your description of your day makes me tired just reading it.

Patty

jenn3

weety - Our STD policy is set up that you can work part-time (under 20 hrs/week) during the 6 month coverage.  Is there enough time left or does your policy allow that?  If you could go back part time and still have coverage that may help.   I didn't realize I could have worked part-time and still be covered under STD until I was almost to the end of my leave.  And.... I'm not sure if I would have been able to do much or work part-time, but I could have under our policy and would have liked to have known that.  With that said, if I had elected to work during the 6 months, I would not have been eligible for LTD, an additional 6 months.  In order to be eligible for LTD you have to be out of work for the full 6 months.  Another option - do you have LTD with your employer?

Kim09

Weety - Jenn brings up a good point about the LTD.

Guess what?  I actually had hat hair today.  Even though my hair is only about 3/4" long there is enough now that I got hat hair.

jenn3

Kim - Funny you said hat hair.  Mine is getting to be like that too.  Too long to cover up - it sticks out around the sides, but doesn't seem long enough to go commando.  It's crazy isn't it? However, today I went out w/o a head covering, figued it's time and I'm tired of wearing scarves and bandana's.  Tomorrow I'll probably wear the covering into work because it's cold and shock everyone by taking it off, if I don't chicken out.

jenn3

Well I had plenty energy this past week and weekend, but today I just felt so run down and my legs and feet were killing me.  I had planned on staying at work until 3p or so, but left aroun 1p - I just needed to come home and rest.  Ugh!  I'm guessing I pushed myself a little too hard because I've been feeling better. I walked 5 days, moved plants around because of the freezing temps, cleaned, cleaned, cleaned, bathed dogs, cooked and went back to work.   Oh well........ guess it's getting myself back into a routine and trying not to do too much at one time.  Tomorrow I meet with the radiologist and will have my mapping done at the same time.  I'll let y'all know how it goes.

Lilah

Pace yourself Jenn girl!  But I know what you are feeling... I was exhausted walking through a mall about 3 weeks after I finished chemo and couldn't understand why.  I still don't have 100% stamina... but then I did have surgery Dec 9 so that could account for some of that.  Feel feel fine though now that I am 9 weeks PFC.

Cheers,

Lilah

jenn3

Lilah - before BC I had a hard time sitting still and was always on the move and now that I'm starting to feel better my mind is telling me to go, go, go, but I don't think my body is ready -  I think I'm still suffering with neuropathy stuff.  Although I'm not sure - I'm going to call the onc tomorrow.  I am having a lot of leg and foot pain when I stand for more than 5 - 10 minutes and it gets really bad when I've done my walking a few days in a row.  In addition, now that I'm back at work I'm noticing it's hard to write for more than a few minutes at a time. I'm guessing it's still neuropathy related because I still have numb toes, finger tips and temp sensitivity, but not sure.  I hate to complain because I do feel much better than I did just 3 almost 4 weeks ago. 

Lilah

It will get better Jenn... but you are going to have to take it easy still for a while longer!

Hugs, 

Lilah

msmpatty

Jenn,  I think we so look forward to the end of chemo that we forget it is going to take a while to get back to our normal energy level.  Plus...you had such a hard time on the Taxol!   I'm just sure it will get better, but maybe not fast enough.

Kim, Congrats on the hat hair!   I'm getting just a little of that in the front, but it may be the least of my problems as my hair grows out.   I'd often been told by hair stylists that I had lots of cowlicks, but when we buzzed my head we were amazed...my hair grows in swirls all over my head.  Even at 1/2"  I'm beginning to see some very strange hair behavior!

Patty

YoYo44

Hi Ladies,

 Thanks for the chuckle about the hair Patty.  My son has a couple of swirls so his hair always sticks up in the back.  He is going to LOVE that when he is a teenager!

The laies are right Jenn, take it easy and don't be so hard on yourself.  I am the same way, go,go go and it is hard to not go back to that now that I have some energy.  I look forward to next year when I will be able to though!  Even though I got by the Taxol pretty well I still find my feet get tired after not much activity.  But malls are a killer!  I am over all the Taxol SE's now but I do find the tiredness in my feet persisting a little.  Wearing slippers at home all the time helps.  So for you who had the SE's that much worse it is not surprising.  Good luck with work.

Take care ladies.

jenn3

Lilah/Patty/YoYo - Thanks -  I talked to the dr today and he did say that the neuropathy takes time to go away, sometimes months - ugh.  He said my symptoms are "classic" symptoms and is starting me on Neurontin to see if that helps.  He also told me that exercising more won't make it better and said when it starts to hurt - stop and rest.  I was there in my work suit and he saw that I was wearing flats and said to continue wearing flats, no heels and to listen to my body.  Oh........ and I do wear slippers at home too.  The slippers feel the best!

Today I went to work and worked my butt off - I'm feeling the momentum again and it does feel good.  I also met with my radiologist today - loved him.  He did the mapping and I will start radiation on the 25th.

Hope everyone is feeling good and has a great evening.

MaineCoonKitty

WOO HOO!  Finished my last chemo infusion yesterday and get a whole month off before I start rads.  It seems so long ago that we started this August group and thought we'd never be finished.  But the time really flew by and one by one, we're moving on to the next place in our journeys.  I send my love and grateful thanks to all my August sisters and those of you from earlier groups who dropped by to lend us your wisdom and support as we followed in your footsteps.  Now, as "elder sisters", I hope we can help guide and support those who come after us as well.

Hugs to you all!

Lilah

Wooooooo hoooooooooo MaineCoonKitty!!!!!

Lilah

msmpatty

MaineCoonKitty -- Congratulations!   I'm right behind you...three more weeks and done!

Patty

jenn3

MaineCoonKitty - So glad to hear from you and really happy that you finished chemo - the light at the end of the tunnel is getting brighter..........................

Kayel

Good Morning Ladies~

Congrats MaineCoonKitty!!

I finished my last chemo last Thursday!  I also wanted to thank each of you for all of the support.  It is so nice to be finished this first part of the journey.  I have my rads mapping done on the 25th and will start the first week of Feb.  It is nice to have a few weeks of nothing.  I am feeling good and not quite as tired.   I am ready to stop covering my head even though I only have a little more than 1/2 inch.  It is wavy and looks good.  It is just white.  I am not ready for gray hair so I am coloring it today.

I am so glad to hear of each of you and how well you are handling everything.  What a long strange trip it has been, lol.

Have a good week. 

lindal52809

Hello ladies,  Congrats to those who recently finished their chemo treatments.  I was so relieved to have it end.  I also want to send good thoughts to all, especially those dealing with additional issues.  Please be patient with yourself. That's all I personally can suggest, because that's what I had to do.

I had mentioned my swelling ankles and arm, about 2 weeks ago.  I did call my dr, and she perscribed a water pill for me to try, which did the trick. Back to normal now with that. In fact it also helped with the aching teeth too.  I'm only guessing but my gums must have been swollen too. I see my dentist tomorrow. 

The medicine they put in us is some pretty wicked stuff, and I understand it takes time to work it's way out completely.  I am very greatful to you all for your support and your sharing along the way during this chapter of my life.  I am ready to continue with the next chapter(s) and will keep coming around to check up on you all.

I don't have the hair back yet, and although it never was a problem for me,  I started to get concerned, but that won't help, so I will just be patient (again) .  There is some bristley stuff all over, so that's a start.  It's just taking me a little longer.  (my last treatment was Nov. 25th) Someone (Kayle) mentioned coloring her hair already, and I just wanted to note, that I read we shouldn't do that for awhile, but that's your choice.  Good luck.

I go for my bone density test in 3 weeks, and we'll see if I will be going on the Zometa then.  My onc really wants me to.   I'll let you know later.  

You all take care, be patient and Smile. You are Beautiful !!!   hugs to all!!!

msmpatty

Kayel & Linda - WAA HOO!   So happy you are done.   I'm right behind you...I'll be done January 27th.  Linda, patience on the hair!   Mine started coming in 10-weeks after my last AC.  I'm still on the Taxol but that hasn't stopped it.   Kayel, I'm curious as to the results of your hair coloring.

Has anyone tried Ovation Hair Therapy?   A friend gave me some for Christmas and it says it grows stronger hair faster.   I'm afraid to use it while still on the Taxol, but thought I might give it a try after I'm done. 

Patty

buccaneersdj

Congratulations Mainecoonkitty and Kayel and everyone else finishing up with chemo!!!! As far as the hair thing, I am now 9 weeks PFC and I have quite a bit of white/blonde hair in a ring around my head and very little hair on the top and front.....come to think about it I look alot like my 65 year old dad! I guess it will be awhile before I go topless!

Lilah

Kayel and Linda -- wooo hoooo for finishing chemo!  Feels so good doesn't it?

I for some reason never got the white fuzz (or if I did it was so colorless as to be invisible).  I now have black hair growing in on my head (pretty uniformly).... and my eyebrows also grew in black ... my hair is more brown than black so am surprised at the darker color.  I had nothing until week 8/9 PFC!

Lilah

jenn3

Whoo Hoo - to Kayel and Linda for finishing chemo!!!

My hair started coming in while I was on Taxol - it initally came in dark brown or black - now it looks more like light brown hair with the white fuzzies.  My eyebrows and eyelashes are still bare - sure wish they would make a showing.  I really miss them.

Donna - I also seem to have a lot more hair around my head with the top being a little thinner.  I was at work today and a gentleman from another dept came by to drop off something - his hair looked like mine.  I had a good laugh all by myself.

Karen09

Yippeeee to Kayel and Linda for finishing chemo!!!!!!!      Doesn't it feel good!

Patty - I hope the rest of your chemo goes by quickly for you!

jenn3

I went to work today without my scarf - my head finally made it's debut.  The reactions were good and support.  Now I can quit wearing scarves at work - whew!!! I really am tired of covering my head. 

Tomorrow the Saints are playing their 1st playoff game - the city is in playoff mode - everyone at the office, coming into the office and on the streets were wearing Saints clothes today.  If you're not a Cardinals fan do a little Who Dat dance for us!!!!

Hope everyone has a wonderful weekend!!!

buccaneersdj

Jenn, I've got your back! GO SAINTS!!!!