BC, Treatment, and Working?

[chicagoetc]

[Did you know there are more than 80,000 posts to the her2group discussion board??? I am in awe.]

I'm writing this because I decided early on (in July/August) that I would continue to work fulltime (using sick days and a slightly flexible schedule). Just this past Friday (a week ago from yesterday) I finished my last dose (every three weeks) of AC. I had this past week off from work. And I was glad (have been nauseous/queasy/out-of-sorts all week), enough so that I am not sure what would have happened had I been working every day.

I know where I am being treated that other women choose to work (which is why we go in on Fridays for chemo). But I don't know any personally. Those I know from elsewhere who have had BC have either not worked or worked a greatly reduced schedule.

Every week is different, with some new side effect or related problem (some of them too embarrassing to mention). Almost every week (if not more frequently) I call a nurse or my doctor for some issue or another.

For the first time this week I have wondered about my ability to continue working as I am. I keep reading about reoccurring/metasticizing cancer (some of you are heroes of mine already) and realize there are no guarantees. But also my chemo schedule steps up starting December 7...moving from every three weeks to chemo every week with Taxol and Herceptin...and a muga scan scheduled December 6 etc. Once I'm done with the Taxol (I presumably continue the Herceptin) there's radiation, more reconstructive surgery and God only knows what else.

My question here is: Do any of you have thoughts, suggestions re working? [Ok, I'm working but that's about it...I go home, put on my pajamas, have a bite to eat with my husband, watch an episode on TV and then go to bed.] What makes or does not make work doable? How does one know when too much is too much or when fighting to stay at a job is worth it?

Melanie

PS: I haven't posted here a lot but I use these forums/posts/threads daily to learn more or just to hear how you respond to each other. Some of you have obviously been here a long time and know each other well. Some of you have been through more than I can imagine. It is inspiring to say the least.

[BonnieR]

Melanie, I can't exactly answer your question but just wanted to say how much I admire you for how much you have been able to do. You are remarkable!!
I have heard that AC is more difficult than Taxol/Herceptin. So you may have the worst behind you, in that regard.
Keep the Faith!

[Sheila]

Melanie
I am in awe of all you are doing...I worked when I was first diagnosed, didn't know life without the work...I decided to have reconstruction 1 1/2 years later, then ended up with mets...with mets came Herceptin (this was before Herceptin was given as protocol), which meant a trip to Chicago (170 miles R/T) every 3 weeks for Herceptin....and tests, and Dr. appt.'s.....my job was traveling as a nurse, I worked for a large construction company and worked mostly nuclear plants all over the country....I would only get home once a month. I had to make a decision on whether to stick with 1 oncologist, or play traveling oncologist, which made no sense to me...I felt like I was chosing between my life and my job. I chose my life! As stage IV, the company disability insurance mandated that I apply for Social Security Disability, so I di, and I was awarded it. I miss my job, I loved what I did, but I wouldn't trade my life now for anything....I say if you feel like working and it isn't too hard on you, go for it. My job entailed working 13 hour days 6 days a week...I know from the past 6 mos of Taxol, Avastin and Herceptin, I couldn't do it anymore....I get tired easily most of the time! Where do you go for treatments? I go to Rush as does Donna D on this site. Good luck with whatever you choose to do, and welcome to our group!

[dhealey]

I continued to work through my surgeries and treatments. The A/C treatments were the worst, I had mine every two weeks. The fourth one just about did me in but it was during our christmas break so I had time to recuperate. I found the taxol/herceptin treatments much easier, again I had these weekly for two months then just herceptin alone every three weeks. I will finish up in December. During the months I took chemo I did nothing after getting home from work. Work did help me to feel normal and helped with my depression. I work as a nurse in a doctors office and stayed very busy. On reflection though I would not have done it any other way. Work actually helped me not to think about the cancer. My enery is no returning and I almost feel like my old self again. I just require more rest than I used to. I think it is a personal thing whether to work or not. For me also we had just bought a house and my daughter was in her last year of college. I could not bear the thought of losing my house or my daughter dropping out of college. I did not do reconstruction so I can't advise on that or the radiation. What ever you choose will be the right course of action for you. Best of luck.

[Mary Jo]

Hi Melanie,

First off, let me say I applaud you and your stamina and all you are trying to do. No one can answer you specifically as to when you shouldn't work etc. because we are all different in that respect.

My own experience is that I did continue to work part time throughout my dose dense A/C and dose dense taxol and herceptin, with herceptin being every 3 weeks for 1 year. I always had chemo on a Wed.(every other) and would take off every Thurs and Fri following a chemo round. I was almost always ready to go back to work on Monday. That is not to say everyday was great or that occasionally I didn't have to take a day or two additionally off. However, that being said, I work 20 hours a week on my job having every Wed. off always. This schedule worked for me and I was able to hold up through it.

I believe your body will dictate to you what you can take and tell you when enough is enough. I believe you will know. For some of us staying actively involved in life is what we need to cope with the disease and it's treatments and for others it's too much to keep up the pace of before. It depends on the job, your physical stamina, how the chemo affects you physically etc.

So, I pray you good health and stamina throughout your treatment. I pray you will know IF you feel you need to take a break from work and that the transition will be acceptable to you if need be.

Take care of yourself. You're the only YOU there is.

May God's Peace surround you today,

Mary Jo

[chicagoetc]

I appreciate that three of you have responded. I would still be interested in hearing from others as well (if you have time).

Bonnie was encouraging in a way I did not expect.

Thanks to Sheila too. It sounds like you worked a year and a half? But maybe with surgery and not chemo? I can't imagine traveling as you did to get treatments (but it would be worth it I am sure). My providers are at Evanston Northwestern Kellogg Center. [I hope to meet Donna D at the beginning of December. My fantasy is that we would get to know each other and drive down someday to visit you...bringing a picnic basket or something. Sounds like you've been through a lot from your posts.]

Debbie, sounds like you did work through everything. That's encouraging. I'm glad too you thought Taxol/Herceptin was easier than AC. I don't know what it'll be like getting daily radiation (I'm assuming starting in March) for six weeks...and maybe the rest of the reconstruction won't happen until six months from then (that'd help me at work with FMLA in case I need extra time off).

Mary Jo, parttime sounds appealing...but I'm not sure it's an option for me (I'm a clinical social worker and a supervisor and so have folk to hire, to train, to supervise, et al). Maybe it will be, but I would guess it would have to be more than like a four day week. We'll see. I especially like what you said here: I believe your body will dictate to you what you can take and tell you when enough is enough. I believe you will know. It sounds like my physical therapist who encouraged me to work with my body and not against it.

I realize too that some of you may not work or have worked because of children at home or other commitments. Which means you work(ed) in spite of everything and through all the treatments.

It means a lot that the four of you responded. Again, if anyone else has input (or thoughts on working or not through treatment) I'd be glad to hear.

Greatfully,
Melanie

[Becky]

I worked full time as National Sales Manager of a large, well-known chemical company. I had 9 outside sales reps, an inside rep and an admin reporting to me. The only thing I did not do during chemo and rads was business travel. I had chemo Oct - January and this is the cold/flu time of year. Also, I did not want to get stuck somewhere where I could not get home in time for chemo. During rads, travel is impossible since you get a treatment everyday. I was not able to start Herceptin with the Taxol (had dense dose AC followed by dense dose Taxol) because the trial was not over. However, right after rads, the great Herceptin results were announced and I started Herceptin (every 3 weeks) 4 months after my last Taxol. I traveled for business during Herceptin (received 16 months of Herceptin versus the traditional 12). I almost never traveled during a Herceptin week unless it was the first day or two of the week (got Herceptin on Friday) - same reason as chemo - didn't want to miss a treatment.

During chemo, I did take "disability days". Then, my boss just said - work from home those days instead if you can. The one hr drive to the office (and back) is bad too. So, on bad days, I worked from home. I could talk to my reps and customers and they didn't know I was lying in bed or on the computer in bed. Then came the office "sickness" of which my boss told me just to work from home. This was 4 weeks straight cuz everyone was sick. This was the year there was no flu shots (I got one but the regular population had a hard time getting it).

It is very doable and I had a very responsible job. You just have to know that you might not be able to do it everyday. HOWEVER, the AC is behind you and I thought that was the worst part.


Just listen to your body. Rest when you need it. The chemo won't kill you but a minor cold can if it gets the best of you when your defenses are low and you are exhausted when you should have been resting more.

During rads and Herceptin alone - absolutely no problemo!

[pffida]

I worked the entire course of A-C and then three rounds of Taxol/Herceptin (didn't receive last Taxol because I was allergic to it). I continue on with Herceptin.

I am the director of an Information Technology Department in a bank. I used to work about 60 hours per week, but cut it down to 40 hours per week. One thing that really helped was the ability to telecommute. I actually worked on infusion days, expecially Taxol/Herceptin which was 5-1/2 hours. I'd bring my laptop with a wireless EVDO card and was able to work. I also went home early on those days when I was just too tired (generally on the 3rd day after A-C). I also have a flex schedule, with every other Friday off. Through it all, I never had to call in sick at all (other than the two weeks I took off for the RMR).

I didn't have radiation, although two women who work for me did. Both women needed to take time off for that -- they just became too physically tired. Both of them have high contact jobs (lots of phone calls with problems to resolve every day). My job is different -- I don't do day-to-day support and if I'm not there, I have several managers who can take over.

I also think it depends upon what your home situation is. I have a very helpful husband and my children are grown. If I had to come home every night and cook dinner, that would have been difficult. During the beginning of chemo, my sleep greatly increased, sometimes 12 hours per night, so you also need to account for that.

I also think it depends upon your state of mind. I had a choice to go out on disability and chose not to. I was concerned about being gone from work so long and really didn't want people to focus on that. Plus, I felt good and couldn't image sitting at home all day.

So, I think it depends a lot upon your kind of job and your family situation. If your company is highly dependent upon your being on top of things, very responsive, and you have lots of day-to-day responsibilities, then I think working through chemo may still be doable, but radiation probably isn't. If you have a job like mine, with some flexibility, a very understanding boss, and good staff under you, then chemo is very doable, but I still think radiation would be difficult. If you have few demands at home, it's more likely that working through treatments will be an option for you.

Let me know if you have any other questions.

[Colleen007]

WOW! You are a pretty amazing woman! If my circumstances were different, I may have tried to work through chemo. I was technically on maternity leave when I had my lumpectomy, etc. But shortly after the surgery, I found out I was stage IV. And not knowing if I had 2 years or 20 years to live, I decided NOT To go back to work because I didn't want to have regrets on my deathbed that I could have been spending time with my new baby instead of working. Since then, my onc. has been continuing to support my long-term disability claims, so at least I get some income and health insurance from my prior employer (of course, since I still go for chemo every week, it is not a stretch for her to support me). It is a tough decision and only one that you can make. But, if your company offers disability benefits and will still continue your health insurance coverage (provided that you continue to pay your employee share), it may be worth it to take the time for YOU and put your all into getting well (instead of trying to spread yourself thin at work and at home).

Also, I had a pretty "easy" time with Taxol, but know 2 other people that I have met on this journey who had a really tough time with Taxol's side effects. Since you won't know how it will impact you until the treatments start up, that may be another reason to consider taking a leave until you finish your treatments.

Good luck with everything.

[Gerri]

Dear Melanie,

The decision to continue working (or not) is unique to the individual. I continued to work full time, taking off every other Friday for treatment. However, my kids were grown and in college, and my husband was very supportive. For me, working meant carrying on 'as usual' and I really think that being out of the house and around people helped me through some of the rough times. I had a much easier time with AC than Taxol. (My onc told me that her patients that breezed through AC had more difficulty with Taxol - and visa versa.) I managed to keep nausea at bay during AC but Taxol got me good with neuropathy. My job at the time was such that I could spend most of the day at my desk with very little moving around. When I went through radiation I scheduled it so I would leave work around 10:30am and then return at my lunch hour. I had so much sick time accrued that this worked out perfectly. Oddly enough, the fatigue didn't set in until long after I was done with radiation. The important thing to remember is to listen to your body. If you are tired, rest. If I had small children I'm sure I would have done things differently.

Best of luck to you as you try to make this decision. Let your body be your guide.

[chicagoetc]

Gerri, I was just thinking that I needed to hear from someone who had worked and had actually gone through the radiation...and there you had posted a reply! Though I wasn't thrilled to hear about your experience with Taxol. (I hope I have the same experience Colleen did.)

It was really helpful to hear too from Becky and pffida...as women who work in management. I supervise eight people, probably need to hire another as soon as we can get approval, typically supervise up to twelve. They are all good, seasoned staff, professionals in how they handle themselves, their responsibilities, their schedules et al. If I'm not there, they do fine. Given it's a clinic though I have to sign off as a supervisor on a lot of the work they do (not every day stuff but assessments, service plans...). Fortunately I too can work from home as my boss and hers set me up for online access to everything once I was diagnosed. Maybe I will print out hardcopies of things I need to sign to read while sitting through the Taxol plus Herceptin. I haven't had the energy recently to do a lot from home, but maybe this will help over the next 12 weeks.

Overall it sounds like there's no way to know for sure...but it's good to know that it may be possible to work through most of this and that some of you have. It's also good to know that, while I love my job, there may come a time when it doesn't work. But that may be ok too if that's what I need to do.

I have a lot to be thankful for.

Melanie

[KellyA]

Hi there,

I teach preschool, and it just so happened that I got my AC in the summer when I was off. But I returned to work for during the rest of my treatments- 12 Taxol, 52 Herceptin, and rads. I had some reconstruction surgery done also. I missed 1 day that entire year to have a surgery. I was tired, but it really wasn't that bad. I also had three young boys at home, and all of their after school activities. It wasn't fun, but it was do-able, and I had alot of help that got me through.

Love, Kelly

[LOPSIDED]

i Worked On A Part Time Basis For A Year. When I Had My Mastectomy, I Did Take 4 Weeks Off. I Won't Lie, I Was Exausted. I Was A Bank Teller & On Busy Days I Had A Hard Time Concentrating. I Was Able To Keep My Medical Insurance & Work Part-time Because I Qualified For Short Term Disability. After A Year, I Resigned & Paid The High Price Cobra Insurance. It Was Hard Working & I Had A Lot Of Family Stress (my Father Was In Hospice Care). Shortly After I Resigned I Was Diagnosed With Ovarian Tumors-------now I Know Why Working Became Impossible. I Applaud The Amazing Women Who Are Working. I Do Think It Has Its Benefits. I Have Been Home Almost A Year Receiving Social Security Disability. I Feel I Will Be Able To Return To Work Part-time But Not At My Old Job. They Told Me Once You Resign On Long-term Disability They Do Not Hold Your Job. I Have Felt Very Isolated The Past Year. Its The First Time I Didn't Have A Job Since I Was 18. I Needed The Rest And Feel Everything Happened The Way It Was Suppose Too, Good Luck In Whatever You Decide For Yourself.

[GuitarMom]

Hi Melanie,

I've been working almost full time since diagnosis in mid June. I had a mastectomy early July and only needed two weeks off before I started back in full time again. I did dose-dense AC and took off day of treatment (always a Friday), and then I usually worked from home the following Wednesday as that's when I'd feel the most fatigued. I'm on #7 of 12 weekly Taxol/Herceptin, and the weekly Taxol has been pretty easy. A little bit of muscle and joint pain, but nothing too outrageous. I'm not nearly as tired as I was on AC either. Granted, I still get tired, but it's manageable, and I'm back up to walking two miles a day. I work full days Monday thru Thursday and then do my treatment on Fridays. Don't know what to expect when I start rads, but Taxol has been a lot easier than AC!

DeAnn

[weezie1053]

Melanie, I would like to echo, everybody responds different to chemo, and let your body be your guide.

Now that I have said that I too worked throughout my chemo. I am type-A personality, and it was very hard for me to let go. I had to learn to lean on others who previously leaned on me. I work with 7 gals, and they were amazing. Also, when I returned to work, I found it much easier to delegate.

I won rounds 1 and 2 of the AC/Cytoxin combo, but I lost rounds three and four ending up in the hospital because I pushed myself too hard. (Murphy's law: everything that could go wrong did, including low blood counts, bronchitis, irregular heart rythym, etc.) Also chose to be treated, during this setback, at a local hospital because it was convenient, and I should have bit the bullet and travelled 2 hours up the road to my primary provider, UVA. I then jumped back in the ring for the weekly Taxol. I would have the treatment on Friday, and then take off the weekend and longer if needed. I have to admit by week 12 of Taxol, I was feeling more fatigue than in the first 9 weeks of treatment. I have been working in my industry for 26 years; however, I have worked for my present employer for only 4 years. It was not in my nature to put my feet up--not yet.

I also was considered somewhat of a phenomen in the Fusion Center because I drove myself to my Taxol/Herceptin treatments. The Onc cut back my benedryl after my first week of Taxol to see if I could tolerate it so I could drive. I did, and this allowed me to stick with UVA for my Taxol and Herceptin treatments. Their medical team is superb!

Words of advise. Obtain a copy of your company's disability policy and procedures contract directly from your provider--not just from your HR department. Find out who their broker is in case you have questions that you do not feel are being adequately answered by your company. I found out way too soon that I knew more about the provisions of our company disability plan than my payroll and/or HR depts. Do not leave anything to interpretation. My employer has 80+ properties and thousands of employees, but rarely do they have an employee "work" while on LTD disability. In fact, our HR VP advised I was her first. They are accustomed to employees taking the leave of absence. Working while on disability is the minority. Generally, there are provisions that allow you to work while on both short term and long term disability. As long as I was absent 20% or more of an average monthly work calendar, I was eligible for LTD. I was compensated by LTD on those days I was absent. I kept a calendar tracking all of my time so as not to jeopardize my eligibility. I had a HR gal tell me I was going to have to pay cobra for my health ins premiums while on LTD which turned our to be erroneous. As long as I continued to work while on LTD, I did not have to pay any additional cost for my health ins premiums. I was also told by the same HR gal that our company has the right in our State to terminate at will anybody that is in a management position and is unable to return to work after 90 days. I took that one all the way to the upper management, and his response was "over my dead body."

Chemo is accumulative, and you will need to become familiar with your blood counts after each visit. I could almost tell if I was going to have an off week, if my counts were low. I only missed one treatment out of 16, and that was due to my hospitalization following week three of AC/Cytoxin.

I was blessed in that my employer was very supportive. Technology also allowed me to work some from home. The flip side of the coin is that they expect Superwoman to always be soaring, and some times I had to throw in the towel. I finished my chemo in Feb, and my last Herceptin treatment was 2 weeks ago. I do not have the energy I had 18 months ago, but I am getting there. Most of my side affects have faded. My Onc once told me I was a textbook for side affects, but fortunately, most of them are history. I have read it takes about 12 months after the last Herceptin treatment to get that "good as new" mojo back. If I was ever to have a recurrence, I do not know if I would choose to continue working as I am not in the same shape I was 18 months ago. I hope I do not have to make that decision, but it is one I contemplate in my own mind every now and then. I gained 20 pounds, and I know that has adversely affected my stamina. Next week...Weight Watchers, here I come!

Good luck and get a copy of your company's contract with your disability provider. After I got my copy from the disability provider, my company posted both plans on our HR database so others in my company would not have to search for the answers as I did. Again, my company continues to be very supportive of me, but it has been a learning experience for more than just me.

Good luck and take a day at a time...

Louise