Starting Chemo May 2008

Hi everyone,

haven't chatted in awhile, just been keeping up to date on everyone else. Sounds like you all have things under control, well as best we can anyways.

Had 2tx last thursday and have been doing pretty good, just feel more tired this time around and no get up and go. i'm kinda in a funk...I think the last 4 months are finally catching up with me, i've been so busy trying to be positive and upbeat for everyone else that I think i'm mentally exhausted, trying to live up to that strong person idea they have of me! .....This to shall pass. 

Anyways...i'm 1/3 of the way thru chemo, there always is a bright side!  Gave myself my first neupogen shot yesterday, the shot itself was no problem it was just getting the needle into the vial , my hand was shaking so much i couldn't get it in straight. 4 more to go every other day. I will get my counts checked on Friday to see if this is helping this time.

Familyroks i'm glad you mentioned the lint roller and i'm not the only one who is using it.  When i was rolling my head i thought, if people only knew what we do behind closed doors !! After the buzz  I just got a few stragglers who are hanging on for dear life, but they are prickly at night and a bother.

Good luck to all the newbies taking their first steps, and to those trying to manage se I hope you kick them in the butt ! 

Have a good day everyone!

Desi,

I was in a fog while taking meds after the first round. Dizzy? I can't remember for sure, but just foggy. It is telling your body to rest. My friend told me I had a certain number of units of energy to use each day. Say you start with 100. Chemo (first round) just knocked you down to 60. It takes 30 to feed, shower, blah, blah all the regular daily stuff. You are left with 30 units. You need to decide how you want to expend those units. For me, it was walking. Even though they took up units, I feel I also got to deposit an extra few. For you, it might be taking the extra trouble to have a bubble bath instead of a shower or to force yourself to just be...that takes energy too. I must tell you I had two very rough days after chemo...not right after, but after I stopped the drugs and before I felt better. I was in panic mode, but then it went away. Let the waves wash over you once in a while if you have to . . . mostly, we'll surf and ride the waves out together, but every once in a while, I think, we are going to go under. Hold your breath and know you will get air in a moment. I send you my thoughts and support.

Adrienne,

What is with this stupid June weather? Want to make a date to swim bald in Lake Washington sometime in August? Talk to you soon.

Hey Adrienne! I was thinking of you today on our Chemo#3! (We really are on the same schedule.)

I'm going to take a nap but I just wanted to say that I went to chemo bald bald today and had the nicest experience.  Other women approached me and I really enjoyed talking to them. I'll say it: It was inspiring.  (One woman and I wound up buying the same kind of cowboy-ish hat in the shop. It looked fantastic on her.)  Honestly, it isn't bravery so much as I hate having to fuss with crap on my head.  And the warm looks have far exceeded the odd ones. Then again, I just look bald and maybe tired (not sick), and I usually am feeling pretty upbeat, so a smile may help break the ice.

Revelation:  My bald head says "I have cancer and am being treated with chemotherapy." It does not necessarily say "I am sick." 

Energy:  I think exercise can actually give back some units/recharge the battery.  I exercise regularly, though not super-hard.  Just a 2-3 mile walk and about 10-15 minutes of boxer-style jumprope on most days.

Okay, it's naptime!

Hey girls, Trying to catch up with all the posts. I feel amazingly good. It's day 23 since my first treatment and the hair is hanging on. I'll probably shave this weekend. Good luck to all receiving tx tomorrow, Adrienne, Rock, Lee Jean and Eddie.



Happy Graduation Otter....keep us posted.



Roxia!!

Hey, I just wanted to check in with everybody before I crash tonight.

Chemo (Taxotere/Cytoxan) #4 went very well today.  The best thing, of course, is that it's my last one!  So far I feel better than usual, possibly because they gave me extra saline along with the premeds and chemo drugs.  They were afraid I wasn't getting hydrated enough during the actual chemo tx's.  So, now it's drink drink drink to keep it going through.

Anyway, I've read all the posts I missed, and I promise y'all that I will post a longer note tomorrow even if I have the usual "chemo hangover."  Thank you for all the encouragement, and best wishes to those of you headed for the pool (or the cruise, or the island tour) tomorrow!

Hugs to all...

otter 

Otter, congrats on being done. I can't wait until I get to that point.

Desi, it will get better. As the other posts said, drink lots of water, eat lots or protein (peanut butter), etc. Also make sure you are resting enough,  and if you aren't getting enough sleep, talk with your doctor about getting something.

After my first tx, I felt bad on the Sunday through Tuesday after even though my treatment was on Thursday. I talked with my doc and she said that will probably continue to be how I feel, and we actually changed the date to Wed so that I will feel worse on the weekend so that I can go to work on the Tuesday after most probably. Hopefully this works.  

Day 14 today, and I am worried about my hair. My hair/head feels a little odd and I am having trouble sleeping. I am actually worried that I will wake up with hair all over. Is that crazy? Like others I am starting to notice other people's hair. I work in downtown Chicago, and yesterday 4 of the approx 100 people I saw walking to work were bald and all men. 

KristyAnn, I have a cousin going through chemo and she advised taking 3-4 Ibuprofen before the Neulasta shot to reduce bone pain. I am going to try it before my next shot next Thursday, and so hopefully it works.  

Eddie - Why did I have you on for today?!  Sorry...so it's you and Kristy for tomorrow.  Look for her in the floral suit!  Good thoughts and wishes for no se's!! 

Otter - Yay you!  Glad you're sleeping - I will look forward to your post tomorrow. 

Rock - Obviously you had a nice long nap - good for you!  Maybe the chili won't be too bothersome...  Glad the bald bald is working for you.  I may have to try it in our 105 dry heat this summer.

Adrienne - Glad yours went well also and we seem to have the after-chemo reaction because you described mine to a tee! 

Desi - I am one day ahead of you and today has been my best day so far.  I agree with the other posts also - eat something (protein if you can) and drink, drink, drink.  Let us know how it's going.

OMG Rock!!! You crack my a@# up!!!!

Thank you, thank you

Nico

Hi All,

Congrats Otter on your graduation, and Best Wishes to Rock and Nancy. "Time to Celebrate"!!

We've all helped each other with the hair issues and s/e's. I have another topic I'd like help with--Re-entering the job market after bc. This probably belongs on another thread, but I wanted to start with you all first. 

Am I required to advise interviewer of bc dx? Is it dishonest to keep dx secret until after they hire me? Some say tell interviewer of bc dx and remainings txs. It effects staffing and he needs to be aware. I think admitting to bc in interview is too much info. Simply "surgery" gives reason for mar-jun gap in resume, and also makes him aware that I will need remaining time off in next few months. Giving "BC" info in interview could be used as reason not to hire. Once they hire me, I would feel more required to give further details (surgery was bc). They would also still have 2mo notice of time off needed for Sept exchange. 

I want to be honest, but also want to protect myself. Unfortunately, some of you are already feeling workplace discrimination of cancer patients (from inside). I am still outside but want to find best way to navigate around the sharks.

I applaud those who have worked during tx. At times, I felt fortunate not to be working. But I also felt depressed or guilty to not be helping with $$ or not to have "normal" routine. I would rather have been working than not. Now I just want to get hired, get back to that normal routine, and close this chapter. Once exchange is done, I expect (hope) to be able to give 15-20yrs to the right employer. Just need to be given the chance first.  

Thanks for any opinions.

Have a smooth day and a great weekend!

Janice      

Dear Janice,

Others will no doubt be more helpful than I will. 

I like your idea of get the job offer and then divulge the information.  I'm thinking, too, that there has got to be some ADA or US Rehab Act website that lays down our responsibilities and what employers' "need to know." 

I was in a peripherally related situation with a fairly competitive international fellowship. I elected to tell the  source of the fellowship that I have a chronic medical condition, but (and this is true), my doctors fully expect to clear me to accept the grant.

I'm not sure that saying "chronic medical condition" is necessary, or interpreted more positively than "breast cancer" but in my case, it made me feel like I was being honest without setting myself up to be pitched out of the program because of their fear.

Desi: I'm sorry that I'm not much use to you either, other than I'm sorry about your coughing and the sleep disruption!  Hang in there. For what it's worth, I'm carrying a heavy pair of bags under my eyes today too! 

Kristy,

Welcome home. Hope your visit was smooth.

Everyone else AND Kristy, Mine was downright hilarious. Round two of A/C. Blood work good; doc, good; port needle, good; But, I have to pee. I am drinking up a storm so I have to pee. I am released, but they forgot to clamp me ... I am concentrating on peeing (we're talking I had to pee like a horse). By the time I get done, I notice I bleeding everywhere. My cute tye-dye chemo shirt is red; my outer shirt is red; my pants; my underwear...it is not pretty. Plus, I don't know if I should try to clamp it as I don't want to mess up the sterile part. A doctor wandered by and clamped it as I left the bathroom. The nurses had no explanation. They were not so cool. My friend, Susan, was behind them while they were trying to fix it and she was making so not very appropriate sign which made me laugh which made her laugh which made me laugh harder which made her snort . . . I guess you know where this is going. Got the cytoxin headache toward the end and they say they will administer it more slowly next time. We went out to lunch and now I am home wondering why pubic hair falls out before head hair but you don't have to answer that.  

Eddie - holy cow!  Glad you're OK (even if the clothes are a loss).  I'm trying to picture what happened -- they actually disconnect you and clamp down the line? (Except, of course, when they forget to?)

I always take the IV pole with me into the bathroom, which is a little awkward in its own right.  Today, in particular, I managed to tangle the tubing around it pretty thoroughly.

Everything else went smoothly, though.  It's good being done with the AC part of my treatment -- I've been segmenting the different drugs, which makes the whole thing seem less daunting.  (Of course, when I start Taxol in 2 weeks, I'll probably revert to telling myself I'm "halfway done."  Sounds so much better than being back at the starting line.)

On the pubic hair (gulp) issue . . . that was what started coming out first for me, too.  Then it stopped, and seems to be hanging in there.  My armpit hair is sparse, but still there, darn it.  (I haven't been able to bring myself to shave since my March surgery - it wasn't as though I was wearing sleeveless tops, and I figured that chemo would take care of matters.  Guess not.  I still find the numbness in that area disconcerting.)    Eyebrows and eyelashes are still there, for the moment, and yes - I'm still shaving my legs.  Just not as frequently.

Good wishes to all!

Linda

Janice,

Not sure if this will help but here's what happened to me. I have been an employee for five years at a small company. When I started, I signed up for STD and LTD coverage. I never noticed they weren't taking out any deductions, then BC hit me. My HR rep sent the forms to me for the Dr. to fill in. I stayed home and four weeks later, she informs me I don't have coverage. Supposedly she received an email from me indicating I didn't want coverage. She has a post-it note in my file. What the hell? I have paperwork with signatures stating I wanted coverage. They can't produce the email of course. She then tells me I can re-enroll. Guess what, denied because of a pre-existing condition. Now I'm screwed with my soc. sec # right? I'm still working but feel compelled to move on and find a new job. I have heard that they can't discriminate you because of a pre-existing condition as a new hire but you can't make any claims for 14 months. I'll need my swap surgery soon and need 6-8 weeks off. I'm not doing it again without pay. I've spoken to a lawyer but do not wish to sue my current employer. Of course the fear is if the cancer returns and I'm unable to work. If I were you, I wouldn't say anything until necessary.



Roxi

Eddie? Boy. If you can snort-laugh through that, you can snort-laugh through everything. I'm going to put a hat on just so I can take my hat off to you.  Ditto to all of you whose lives are rougher than they need to be (with job stuff, insurance stuff, s/es, just stuff). 

I was so tired tonight that I accidentally misread the instructions for my Neulasta injection and shot some unknown (but poss significant?) amount through the needle and into the air. 

I would appreciate it if a couple of you would say things like "Oh, the first part of the Neulasta injection is nothing but saline, anyway!" and other reassuring things (and by "things", I mean "lies").  Next week I'm in DC for an orientation. In my current too-tired state, I am half-convinced that I have guaranteed the immune system end is near.  Even though I know it really isn't and all my bloodwork comes back in the normal range except my RBCs which are a just a little low and given that I spent last weekend staying out until 3 am in large crowds it was kind of to be expected.

And Nancy? THANK YOU FOR THE BIRTHDAY WISHES (and good luck tomorrow!). I mean that. If anybody is having a birthday -- ever -- you need to tell me. Heck, tell everyone!  Because I love birthdays. Not in the "lots of hoo-hah" (and by "hoo-hah," I mean fuss) way, but in the opportunity it provides to pause and say "Here's why I'm glad I was born. Here's what I want the next year to hold."  For the record, I'm glad I was born. I'm glad I have the privilege of having you people in my life now, and in the upcoming months.  I'm really glad all of you  were born and that our paths have crossed.  And on that rambling note, good night!