Starting Chemo March 2015

eheinrich

Bekah absolutely do it. Work will get by without you - not in anyway to diminish your role but if you got hit by a bus they'd figure it out, right? You need to be your #1 priority right now.

Jackbirdie

Bekah- another thought- by taking this time it will probably help you come back up to speed faster. Get back to your life. I. Am voting YES on disability. FWIW.

HUGS.

molly1976

Agreed! I had a much easier time than you (because of no Perjeta, I'm guessing) and even so I took the last two Fridays off as they were my worst days and it was just too exhausting to think about dealing with it at work anymore.

ninjamary

Bekah - If I had diarrhea I wouldn't be at work. Take care of yourself first. I know how hard that is too. I'm working pretty much full-time, but am forcing myself to stay home the day after chemo. Taxol is so much easier than AC, but every week it is harder for me to recover. It's not worth it. I scheduled my chemo on Thursday's so I could work more. That was my thinking in the beginning. Work. Not myself, but my job. We definitely do need my income, but is it worth my health. Probably not. I cannot take disability or the FMLA. I work for a company under 50 employees so most laws do not apply to me. Also our company dropped our STD and LTD benefit.

rleepac

SpecialK - thank you for your bluntness. Makes me realize how I'm over-thinking this!

Leigh - I know you're right. Boss won't be happy but he's just going to have to get over it. If I want a successful surgery and speedy recovery in August, I need to take care of myself now, be as well-rested as possible, and give myself the best chance for recovery as I possibly can.

mysunshine48

Ask yourself, "What is more important.....you or a job?"

SpecialK

Just adding - as a medical professional, what would you advise one of your patients if they came to you with your circumstance?  I am betting you would tell them to take the short time off to assist in recovery for the long term benefit.  There comes a point when powering through becomes counter-productive.  I am pretty sure you are there - and it is not defeat, or failure, or anything like that - so don't think that it is!

SueH58

ok so call me the woos here. I have good benefits and am on 6 months ST DB. I contemplated going back early but know the no -stress and opportunity for rest and enjoyment would minimize my SEs. And I believe it has. Now I'm actually contemplating LT DB while I do rads. I figure this is my time and time I need to ensure max healing for myself. Now as u saw earlier, I still have my emotional meltdowns.....

Beachbum1023

Bekah, JUST DO IT! You need the rest to repair and recover and finish this beast. You deserve it, and the treatments are cumulative. The extra days off to sleep will do you a world of good.

The finish line is there ___________________________ you got this! You'll be in good company when you get there.

Trvler

I agree with Special and that's kind of how I see it. Just do it!

Sue: I get how you feel. It is depressing. I hate even driving by the hospital on my off days and it is very near my house so sometimes I have to go out of my way to avoid it.

wpmoon

Bekah - I've struggled with this decision, too. And I actually finally decided to put in for a leave. I'm not eligible for FMLA leave since I haven't been at my job more than a year, and we don't pay into state disability, so I'm taking leave without pay. But I'm tired - mentally and physically. I felt like the daily radiation appointments, though quick and easy, would be too tiring to handle on top of continuing to train for a really stressful job. I know I'm taking a risk, but my health is my priority.

Trvler

Met with my MO today. But I was more prepared for her so I came back at her when she, as expected, tried yet again to talk me out of going to NOLA. She would use arguments just designed to make me afraid and I would make her push them to the conclusion. For example, she would say no one here was going to take care of me is something went wrong. I specifically said "NO ONE here would take care of me?" and she said well, they would but it would be hard. Why? Why is it hard, I asked? Because they don't have your surgical records, but you could bring them back. Uh, OK. I can do that. That kind of thing. She keeps saying it's about staying in the area but she is only recommending another PS, not another BS, so it seems it is all about the BS. I wish I had thought to ask for a referral to another BS. I guarantee she wouldn't have given me one.

Anyway, I am still going to consult with other MO's. She is hard to deal with. She doesn't complete her thoughts very well and I am left confused. She wasn't really on board with my plan from the start and she is " I told you soooing me' every single step of the way. "I told you you wouldn't get a complete pathological response with neoaduvant chemo with this type of cancer' and 'You did this for your schedule and it's hard to have cancer in your body'. I didn't do it for my schedule. The BS I decided on was the one who wanted me to do it. She just can't get past it and I am sick of arguing with her. I was so stressed about even SEEING her today I forgot to numb with lidocaine. Luckily, the pharmacy had ONE tiny tube they let me have. The nice nurse insisted they order more tubes in case it came up again sometimes.

The fatigue is starting to hit me, too. I was wiped out by 6 last night. Had to drive 2 hours (1 each way) to get my daughter and the other kids and I was exhausted when I got home.

DavisD

just dropping in to say I've finished my last round of chemo! I still have rads and 9 months of Herceptin but I'm grateful this part is over. I feel a little down and I'm not sure why...I guess I thought I'd feel like celebrating and like I'm "healed" but not so much yet. I think I need to crash for a while. Hopefully I can catch up with you all this week since I'm off work. Hugs all around

rleepac

Alright. I'm doing it. I just notified my boss and my DH is getting the STD/State Disability process started. I feel kinda relieved but a little nervous still. I hope I'm doing the right thing...

Jackbirdie

Oh Diane! I'm so sorry I missed this! Congrats! 🎈🎈🎉🎉🎈🔔🔔🔔🔔🔔🔔🔔🎉🔔🎈🎈🎈🎉🎉🎈🔔🔔🔔🔔🔔🎉🎉🎉

Yes still a long way. But stop and congratulate yourself today.

Big proud (but still gentle) hugs

K

Jackbirdie

Allison- good on you for pushing her harder today. So sorry a doctor whose supposed to be a CAREGIVER, andto DO NO HARM does exactly that.

Try to rest. Sorry it's kicking your ass today. Holding your hand, k?

IndyGal35

Yay, Diane!!!!

Thank you for your kind words, Katy! I sure do try.

Well, I rang out today, but I wasn't able to get Carboplatin and Taxotere due to toxicity concerns. That means that I'm done with chemo as of 6/9. I still got my last dose of Perjeta and my regular dose of Herceptin today, and I'll stay on Herceptin for the year as long as my MUGA scans keep coming back OK.

Of course, I worry that I didn't get enough chemo. My MO said that it comes down to a risk versus benefit analysis at this point, and he thinks I may be stuck with severe neuropathy and hearing damage if we push any more chemo drugs through my system.

The bright side is that, since I'm now unexpectedly 3 weeks PFC, they were able to bump my surgery up to NEXT TUESDAY! Wow, that's 3 1/2 weeks sooner than we originally thought it would be. I can still feel a mass in my breast. Even though the BS said it could just be scar tissue, my hopes of a PCR are pretty low at this point. My MO said that not achieving PCR doesn't mean that I'm doomed, but statistics have shown that a PCR for HER2+ women does lower recurrence rates.

Even so, I will be soooo glad to get this evil monstrosity out of my body next Tuesday. I'll probably be starting rads in early August once the expanders are filled. Despite the fear, I am a happy girl tonight.

Jackbirdie

Lee! My goodness! Surgery next Tuesday.!

Very exciting. Start getting that protein going. Have DH get you someCarne Asada to go!

I can only imagine how you want that thing OUT!

You will now be in my thoughts 24/7. Until you don't need me any more.

What a curve ball today! My heart is skipping beats!

Trvler

That's great, Lee!

Trvler

BTW, the liver seems to have worked. My RBC or hemoglobin or whatever was 12.1, up from 11. 6 this week.

eheinrich

Diane & Lee: Congrats!!!

And Yay Bekah!

Carrie37

Good for you Bekah! It was a very tough decision for me too but I haven't had any regrets. Only that I didn't do it sooner!


And good for you too Allison!! Your MO sounds rude!

Lee, glad you are done!
Thinking of you all!

mysunshine48

My MO is not rude, but it irritates me that I only see her every three weeks, on the day of my infusion. Otherwise, I see her PA, who has NO personality. I have never seen her smile. When I do see my MO, she seems like she is in a big hurry. I am going to make a list of many questions and hsve them ready for her.

KBeee

Allison, Your MO is so out of line. Switching was the best thing I ever did. A doctor who does not want you getting opinions elsewhere is a big red flag. When I met my new MO (I went to Mayo after I dumped old MO, new MO is local) , he asked what my doc at Mayo had said, what their plan was, and told me anytime I wanted to go up there again, to let him know, so he could set it up, make sure my records were up to date, and communicate to the docs there to make sure we were all on the same page. When I met with my BS, he also asked what their surgeon had to say and what their plan was. I asked him to add something based on what they were going to do. He did, even though it was not in his original plan...and that is how my second tumor was found. Any good doctor will encourage other opinions and wants to hear what the others have to say...and they make time for those discussions. My old MO was always at least an hour late (which one of the chemo nurses shared with me is because he shows up late every day) and the MO I have now is on time, but makes you feel like you are his only patient of the day. He has even seen me over his lunch hour. THAT is the type of MO you want leading your care and in charge of looking after you for many years to come. I am impressed with your hemoglobin. Mine is still pretty low!

Lee, Congrats on being done with the worst of this and moving ahead to surgery!

Diane, Congratulations on finishing chemo! Let the healing begin!

Bekah, I hope they are supportive of your decision; you do need to take care of you first.

Katy, How are you feeling???

Jackbirdie

So very well said, Karen. I appreciate you supporting Allison in this way.

I am feeling a bit better this afternoon, but it is slow going.

Just keep swimming....just keep swimming......

neverthought

Wow - everyone has so much going on.  Can't believe how brave you all are, how different all of the treatment regimens are and how different the MOs and nurses are at the different places.  Without your stories I would feel so alone, wondering if I was the only one with a list of questions a mile long for my doctor and wondering how competent her PA is.

It's 4 weeks since last infusion and things were getting better for a while until they weren't anymore.  More leg fatigue, even wakes me up at night.  It's the weirdest thing - why are my legs tired when I've been sleeping?  Most discouraging is vertigo at least several hours every day.  Not the spinning kind, the kind where you feel like you may fall over any minute.  It's the weirdest feeling, makes it really hard to work and really unpleasant to walk.   It's kind of like the fuzzy feeling you get with a migraine without the headache.  I really miss my walking and wonder if that is why my legs are bothering me more.

Then there is the neurotic worrying about is my laptop what caused my cancer or the cell phone or the microwave or eating too much sugar.  And not knowing if my blood work is improving because MO just assumes it is improving so no need for testing.  And what is that new pain in my back like I've never had before....crazy thinking.

So I go in to work every day dreading the stupid vertigo because I have to have insurance and it distracts me from my worries and I have so much to do I think I could stay there 24-7 for a week and not get caught up.  But still feels good to go to work.  My co-workers and bosses are wonderful.  Not so wonderful was the letter that I got from the main office that I was essential personal, which actually means they can replace me if I miss too much work.  But bosses I report directly to have been great.  I can tell they and my coworkers are just as tired as I am.  Everybody has something going on too.  Hard to justify my almost daily pity party and tears.  Hope you all don't mind me writing.  And since my brother won't return my dying parrot to me, does anyone think it is too soon to be thinking about getting a canary?  I miss my little parrot so much!

neverthought

Am feeling better post chemo, slowly but surely.  If it wasn't for the vertigo I think I'd be on cloud nine about now.

Jackbirdie

Neverthought- Of course we don't mind you writing. That is why we are ALL here.

So very sorry about your parrot. I think you should get your canary

Italychick

Allison, my MO encouraged me to get other opinions and be completely sure of what path I want to take. Your body, your choice, you go where you are most comfortable. Have you tried posting on the Chicago forum (I think I saw either a Chicago or an Illinois one) and asking who people see? Maybe that would help. My situation was overcome by events. I insisted on an excisional biopsy rather than having them poke around on me because I was rated bi-rads 5 and I knew inside me it was cancer. My surgeon got everything out on the excisional biopsy with wide margins, or you can bet I would be going to the absolute best surgeon on the planet. To some doctors we are bodies and they see dollar signs. My surgeon listened to me, said insurance might deny surgery and want a biopsy first, but she fought with them and got it approved. Also my imaging center fought and got my PET scan approved. Insurance denied it the first time. We need people fighting for us, not against us

I will also say, if I get another piece of cancer inspirational stuff, mugs, books, I will have a temper tantrum. My brother gave me this book, I think it is called The Last Lecture about a guy who had a few weeks to live with pancreatic cancer, I got a book with Rosie O'Donnel in it, and the Lance Armstrong book. They are all sitting in a pile. Don't people understand we want to get through treatment and go back to as normal as we can? I don't need inspiration, I want to live and get past this shit sandwich.

Rant for the day. Katy was the only one who gave me a thoughtful gift, cookies!

SueH58

Bekah - Congratulations! How long does it take to get state disability in California. It takes forever in Wisconsin, but I know that CA always acts in the interest of the residents, so I trust it will come through more quickly for you. I hope so.

Does your leave start immediately? If so, sleep in and enjoy!

I'm off to treatment 4 tomorrow. 6 weeks and I day I will be done with this phase of the nightmare!