Working Fulltime

Hi, I took two weeks for surgery (bmx with TEs) and when I had chemo I worked every other week. Took off the week of chemo. I needed the time off but some people continue to work every day no problem. It just depends how the chemo affects you. I may have been able to work a little more than I did in the beginning, but towards the end the time off spilled over into the next week.

I also worked through chemo - had to take a few days off after chemo treatments, and I know that I wasn't at my peak performance all the time, but my work was supportive.  Like Ruth - I had a vague flu-like feeling after treatments, but never threw up or anything.  For me work was a lifeline out of "cancer world" - I could have normal conversations about normal things like people's kids, their weekend plans, and that stupid memo from management.  It was so nice to feel like a regular person, not a full-time cancer patient.  When my hair fell out I wore a wig for the first few days, then said to heck with it and just wore baseball caps with dangly earrings.  No one at my work gave it a second thought that I was bald, and a lot of co-workers gave me baseball caps in different colors so I pretty much had a hat that matched whatever I was wearing that day.  

If you have a supportive workplace where they'll understand that you won't be quite as productive, that you might have to leave early occasionally or may need to just rest your head on your desk now and then, I say go for it. 

Go in thinking that you will do OK and make adjustments as needed. If you can get a little exercise in, that will make you feel better too.

When I first heard it was possible to continue working through chemo, I thought that meant I would be able to work every day just like normal. For most people, that is just not the case, and I felt deceived. I had taxotere, adriamycin and cytoxan every three weeks for six treatments. It generally took about a week to recover. Side effects really vary from person to person and can get progressively worse as you have more treatments. Can your employer be flexible with you?

I wanted to share some thoughts on this topic.  I think the most important thing to remember is exactly what has already been said: everyone handles chemo differently.  Unfortunately, that leaves those about to start with little comfort on what to expect or ability to plan.

I will share my story as I wished I had found someone with a similar experience before I started.  I had 4 small tumors in my right breast.  I actually found 2 myself and the BS found the other 2 during the biopsy (had never had a mammo at that point - was 37 and had just finished breast feeding 6 months earlier).  I can tell you that at almost every step of this journey, my expectations were set one way and the opposite happened.  I went to my primary care doctor first.  She said it was just a cyst, but sent me for further testing just in case.  The mammo found nothing, but they found abnormalities during the ultrasound.  Then a week later the biopsy uncovered 2 more tumors.  All came back cancer.  I chose to have a BMX (lumpectomy was not an option with 4 tumors and I wanted to minimize future risk).  Right before my BMX in Dec 2011, my BS told me she didn't expect to find anything in the lymph nodes.  That was the first thing I wanted to know when I woke up.  None of the recovery nurses knew anything and they wouldn't let my husband in for some time.  When they finally did, he had the pleasure of telling me that 2 of the nodes were positive and more had been sent out for testing. 

It was suggested to me even before the lymph nodes tested positive that I would need chemo.  I started chemo on Jan 12, 2012 with 4 rounds of adriamycin/cytoxan every 2 weeks followed by 12 weeks of Taxol/Herceptin, followed by 9 more months of Herceptin.  I had my port put in the week before.  The surgeon who did my port told me that occassionally they don't work the first time and they have to be redone, but that rarely ever happened to his ports.  Mine didn't work and had to be redone.

My onc told me I would do fine with chemo.  I was young and strong and would have no problem working.  She said occasionally, but very infrequently, people would be hospitalized with neutropenic fever (low white count and fever related to some infection), but she assured me that this rarely happened and would definitely not happen to me.  I was referred to others who had worked through chemo with few problems.  So I came back from my surgery ready to do it.  I had my 1st chemo on a Thurs.  I went to work on Friday and by Monday, I was crawling out of my skin - I was shaking non-stop and the bone pain from the Neulasta shot was unbearable. Unfortunately for me, I started chemo right at the height of flu season.  So one week of my 2nd round of chemo, I was in the emergency room.  I was hospitalized for 4 days with neutropenic fever and what was most likely the flu (yes, I had had a flu shot).  Now as a mom of 2 year old twins, I am not going to lie.  There was a part of me that was relieved to be hospitalized so I could rest because my life at home was hectic, work or no work.  But then I realized that the hospital is the last place you want to go if you need rest. 

At that point, I had to make the very difficult decision to go out on STD.  Emotionally, that decision was the toughest.  I had certainly not set up expectations with my manager that this is what would happen.  I felt like a failure.  The only people I had talked to prior to starting treatment told me how I would be fine or other people with my same set of circumstances did just great.  But I decided I had to go out for 2 reasons: 1) I had to try to minimize my exposure to infections.  Clearly my body was not reacting well at all to the chemo (or actually it was reacting exactly as it should because the point of chemo is to kill the cancer without killing you).  2) I could not work well in a setting where I was accountable some of the time, but could fall ill and not be able to execute at other points of time.

This turned out to be the right decision.  I was hospitalized again after my 1st round of Taxol/Herceptin - this time for 6 days.  I once again had neutropenic fever.  They could not find the source of the infection and ultimately determined it to be a sinus infection because they couldn't figure out what else it could be.  But this hospital stay was worse than the 1st because my red count also dropped to 4.5.  It was continuing to drop and the doctors were kind of cavalier about let's just wait and see, but I chose to have a blood transfusion because my family couldn't function that long without me. 

I finished chemo in June 2012.  Then I went back to work and started radiation (also a surprise because the doctors told me I wouldn't need radiation with a BMX and no one told me that if lymph nodes are positive, you will still need radiation until I was about half way through chemo). 

This coming Wed will be my last Herceptin.  I had my implant transfer surgery a few weeks ago.  I have one more minor surgery to deal with the nipple on my right side (they were able to save one but not the other) and my PS said he will also remove my port during that surgery if I want.  My onc said it is up to me (anyone have thoughts on when to remove the port after finishing chemo)?  I kind of wish she would make the decision.  On one hand, its a constant reminder and physically uncomfortable with my bra strap, but on the other, you carry an umbrella so it won't rain.  I am probably going to have the port removed, but haven't decided for sure.

So that is the summarized version of my story so far.  I share it here because while I certainly don't judge or want to offend anyone in their own choices, I want you to know that your journey will be your own.  If you ultimately choose not to work, this doesn't make you weak.  I wish someone had told me that.  Even my husband, who has been my rock throughout this treatment, was urging me to continue working because he thought it would be better for me mentally.  But ultimately, that just made me feel even more like a failure for getting hospitalized and not being able to work. 

What finally gave me comfort in my decision was ultimately something my onc told me.  She said that long ago before they really understood how to monitor blood counts and before the development of neulasta, etc, they used to try to give people just enough chemo to send them into neutropenic fever.  Because again the idea is that you do everything you can to kill the bad cancer cells without actually killing the person.  I chose to believe that this meant the dosage they had me on was a good one, strong enough to kill a lot of my good cells, so hopefully strong enough to kill all the bad ones.

Whatever you decide, know that it's ok.  And my heart goes out to those who do not have the choice of whether to work or not during chemo.  To feel so vulnerable and weak was a terrible feeling.  To not have a choice is just inhumane.

This is important to discuss. I heard one breast surgeon say that she didn't tell patients about seromas and such, because she thought if they did not expect it, it would not happen to them. I was bothered by this attitude. If you can't trust your own experience with healing, whose can you trust? I appreciate medical professionals who can be candid and direct, and who assume I am the same.

I am lining up rads now and negotiating with STD and FMLA for help covering the time I will need to take off during the month of rads. I am aware of people who can and do go right thru treatment without missing a beat. I do know, however, that the stress of radiation can be cumulative, and I want to stay ahead of the fatigue by working half days through the active part. If I can arrange for that without sinking the financial ship at home, I am going for it. Hopefully I will be back in action and ready for full time at the end of the month. It's kind of a crap shoot, not knowing how it will affect your system, whether its chemo, or surgery or rads. Oh, and then there's reconstruction!

Good luck, bhlri, in pacing yourself thru this stuff. A good time to say, one day at a time...

Mame

Yes, definitely say NO to everything extra. And if people ask if there is anything they can do....say YES, and tell them exactly what it is and when you would like it done. Something that helped me so much is that my co-workers brought us meals a couple times a week when I was on chemo. Not to have to worry about food at all was such a load off my mind (and because they always brought so much that there was enough for a couple days of leftovers).

I second Jane's recommendation to take the anti-nausea drugs exactly as prescribed. That is not an area to 'wait and see how things go."

The other thing that will sound strange, if you can stand to get a little exercise throughout, that will actually make you feel better and help manage fatigue.

After chemo, rads for me were easy, I could feel my energy returning every day....so, like everything else, it is really an individual thing.

Its true that everyone's situation is different.  For me, I decided that I didn't want to change my life any more than I had to for Chemo.  People react differently.  I found that chemo really hit me a couple of days after my infusions.  So I would schedule them for Wed afternoon, and my hardest days then fell on the weekends.  It depends on what you do for work, and how much control you have over things.  I scheduled a lunch break (used to often work through-but not during chemo).  I generally would lie down for awhile at lunch, and that helped.  I usually went to my car to lie down, just so that I could have peace and quiet.  I didn't usually sleep, but a little scheduled rest mid day was helpful.  And I shortened my days a little.  My normal work days are often long, but I limited it to 6-8 hours a day during chemo.   I think it worked out well, and it kept my mind busy during that difficult time.  

I took one and a half weeks off for my surgery and 2 days off for my port placement. I obviously, take off my chemo days. However, I have felt fairly good. I did not get Neulasta after my first treatment and my WBC crashed at zero. I spent four days in the hospital with a neutropenIc fever. I got Neulasta this last time and did much better. I also took my days 10 and 11 off right before the weekends of both cycles, as these are considered my Nadir. I have a lot of hand pain for two weeks and some rashes. With the meds that are prescribed, this has been very doable. I am a third grade teacher and I must say, that I have never been so tired!

Beat of luck to you....

wow im impressed that all you ladies could work during chemo - i absolutely could not.  I couldnt get out of bed for the first 7 days, was weak for hte following 7 then it was time to get chemo again (i was on a 3wk cycle).  I was lucky that financially i could take the time off and do realize for some it is either necessary financially or for emotional well being.  I do not think i could think clearly during chemo and i had a job that req'd a lot of numbers.  I think i would have bankrupted them!  also, i wanted the few days (or week) that i did feel good to be for me and to catch up on all the stuff i couldn't do while i was "out"