Topic: How does anybody get any work done during this?

Forum: Employment, Insurance, and Other Financial Issues — Employment, insurance, and financial concerns are common. Meet others here to discuss and for support.

Posted on: Feb 25, 2021 12:17PM

Posted on: Feb 25, 2021 12:17PM

nola70115 wrote:

Since being diagnosed with a recurrence, I can barely pay attention to work for more than a few minutes at a time. I'm constantly following posts here, thinking up something else I want to research, checking the patient portal at the hospital... this is all my mind wants to think about right now! However I really need, and WANT, to keep working.

My office wants to be supportive but it's a very small company and they have NO policies in place for major illnesses of employees.

What do YOU do to keep working during treatment?

Age 40 at first diagnosis, 47 now. I've got an autistic teenager and a toddler to live for. See my 2014 blog at snarkforthecure.wordpress.com. Dx 4/15/2014, IDC, Left, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 5/15/2014 Lymph node removal; Lymph node removal (Left); Mastectomy; Mastectomy (Left); Mastectomy (Right); Reconstruction (Left); Reconstruction (Right) Chemotherapy 6/20/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 9/1/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 2/8/2021, IDC, Left, <1cm, Grade 2, ER+/PR+, HER2- Dx 2/22/2021, IDC, Left, Stage IV, metastasized to liver, ER+/PR+, HER2-
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Feb 25, 2021 09:26PM jhl wrote:

My diagnosis & treatment was pre-COVID. I was diagnosed in November 2020 & finished radiation Feb 2021. I had that agonizing draw to find out everything up to date about my diagnosis. However, I was still able to go to work & that was really a life saver. I fell back into my 'work' routine & that didn't allow me the mental space to think of cancer.

Beyond that, I have no other observations. It's good to research & plan but it's also good to take a break.

Best of luck,

Jane

Dx 11/15/2019, IDC: Cribriform, Right, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2-
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Feb 26, 2021 10:55AM nola70115 wrote:

Thanks. I do think it's helpful to compartmentalize and have other things to think about. I've worked remotely since before covid and that is very helpful, but it's also harder to concentrate when I have everything else that goes on at home. This morning I was on in a remote meeting with my office and a call from MD Anderson came in, so I had to jump out of the meeting early. I wish I could schedule all doctor calls and appts in the morning and work in the afternoon or vice versa, but I really can't control when doctors will call.

My coworkers are all men in their 30s who either don't have kids or who have a wife who watches the kids full-time, so they already don't get the challenges of managing work and child care. They really don't have a concept of managing work and child care AND cancer. They are sympathetic but I can't imagine I can rely on sympathy very long.

Part of me wants to find a job at a bigger company that would have better insurance benefits and paid leave systems in place, but I don't know that it would be realistic for me to get and keep a new job during all this either.

Age 40 at first diagnosis, 47 now. I've got an autistic teenager and a toddler to live for. See my 2014 blog at snarkforthecure.wordpress.com. Dx 4/15/2014, IDC, Left, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 5/15/2014 Lymph node removal; Lymph node removal (Left); Mastectomy; Mastectomy (Left); Mastectomy (Right); Reconstruction (Left); Reconstruction (Right) Chemotherapy 6/20/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 9/1/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 2/8/2021, IDC, Left, <1cm, Grade 2, ER+/PR+, HER2- Dx 2/22/2021, IDC, Left, Stage IV, metastasized to liver, ER+/PR+, HER2-
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Feb 26, 2021 11:19AM moth wrote:

Nola, I think stage 4 changes things so much. I'm awed you're still able to show up at a desk. I was a mess for some time after the stage 4 dx. Heck I'm still a mess sometimes.

Hope your consults from MDA go well & you get a treatment plan and employment plan you're happy with

I take weekends off

Initial dx at 50. Seriously?? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: Never Tell Me the Odds

Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- Surgery 12/12/2017 Lumpectomy; Lumpectomy (Left); Lymph node removal Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole breast: Breast Dx 2/2020, IDC, Left, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/19/2020 Tecentriq (atezolizumab) Chemotherapy 11/26/2020 Abraxane (albumin-bound or nab-paclitaxel) Radiation Therapy 12/9/2020 External Hormonal Therapy 12/16/2020 Femara (letrozole) Radiation Therapy 3/3/2021 External Local Metastases 3/3/2021 Radiation therapy: Bone Targeted Therapy 1/1/2022 Trodelvy (sacituzumab govitecan-hziy)
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Feb 26, 2021 11:36AM ninetwelve wrote:

I found that I could work with a stage 4 diagnosis for six years, but eventually I came to a point where I realized that my focus and attention span were shot, and that I could only pay attention to things I really cared about. My last year at work was this one, with the pandemic, and it was mostly spent on FMLA leave. I applied for SSDI, and after ten months, I started to receive disability checks, and that, along with my retirement savings, are keeping me afloat for now.

I have read, don't ask me where, that micro-dosing Ritalin can help a lot with focus. Also, yoga and meditation. You're right that the young, with their energy and lack of other obligations, are often unaware of the struggles of working while handling an illness and childcare duties.

12/15/20 - Progression to liver. Tx changed to Xeloda. Dx 9/12/2014, IDC, 4cm, Stage IV, Grade 2, mets, ER+/PR+, HER2- Hormonal Therapy 9/15/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin) Hormonal Therapy 10/1/2014 Dx 7/2016, IDC, Stage IV, metastasized to bone/lungs Hormonal Therapy 8/16/2016 Faslodex (fulvestrant), Zoladex (goserelin) Targeted Therapy 8/16/2016 Ibrance (palbociclib)
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Feb 27, 2021 03:42AM sondraf wrote:

I still work and worked through diagnosis, including giving a presentation while lying flat on my back (camera off!), because I wanted to maintain to myself and others that there was nothing wrong. I remember reading through BCO all the time as well, hoping to read one piece of information or a story that would help make it all make sense. Actually, it was more difficult to take hospital calls at that time as its an open plan office and I couldnt walk well enough to actually find/get to an enclosed private space. Eventually I had too much fatigue and it was easier to stay at home, and I stayed at home to heal, get started on my treatment plan, then Covid hit.

While my situation is not public, I work somewhere that is skewed younger and sometimes it annoys me when I see the Womens Network is hosting a series on Menopause (cause menopausal awareness is all the rage these days) and you have a bunch of naive mid-20s all "concerned" about "the change". Ladies, let me tell you, sometimes you don't have a choice and also, its not necessarily something to fear or will be bad. Late last year I switched teams to one that is heavily male and while THEY don't know what is going on either, I think the increased stress of the role and having to deal with technology/engineering types is starting to wear me down a bit and its led to more than a few angry cries this month. I wasn't really on board with what I was doing before, but now it seems EXTRA pointless. The set up is excellent for working with cancer though so its hard to walk away.

It sounds weird, but frankly I dont know what I would do without working. A plan is starting to come together in my mind, though, so Im hoping to find a path out soon. Its a conundrum for sure. More and more I think its the realization that a work situation that may have been tolerable and able to drift for a bit was fine, now its somewhat imperative to make your time worthwhile, however that is.

Give yourself some time to come to terms with the diagnosis, get through this wobbly period of getting started on treatment, and then see where things are at. A larger employer with better internal programs and support could be just what you need, but wait and see how you react to the treatments.

"The closer we come to the negative, to death, the more we blossom" - Montgomery Clift Dx 9/27/2019, IDC, Right, 5cm, Stage IV, metastasized to bone, Grade 3, ER+/PR+, HER2- Hormonal Therapy 11/29/2019 Femara (letrozole) Targeted Therapy 11/29/2019 Ibrance (palbociclib) Surgery 11/28/2021 Lymph node removal (Right): Underarm/Axillary; Mastectomy (Right) Targeted Therapy 3/1/2022 translation missing: en.treatments.targeted_therapy.targeted_therapy_medicine.short_options.lynparza
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Feb 28, 2021 12:54PM buttonsmachine wrote:

Nola, my only advice regarding work is to let the dust settle, give yourself time, and see how you really feel about working. A stage IV diagnosis can vary a lot between people: while some people are able to work for a long time with minimal time off, others are not. It really depends on what your cancer is up to, where your mets are, what your job entails, and what treatments you need to be on. At this point, if you are feeling basically well and up to it, and if working helps you, then by all means keep working!

On the other hand, if you ever reach a point where focusing your energy on family and self care becomes a higher priority, that is a natural and understandable evolution too. I made that crossover myself somewhere along the line. Unless I get back to being NED by some miracle, I do not see myself returning to work at this point, but I am happy to have the time to spend on other areas of my life. It is the right thing for me now.

Diagnosed at 32. Local recurrences one year later, probably due to needle seeding at inital biopsy. Now dealing with MBC. Dx 8/2016, IDC, Right, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 10/1/2016 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 11/1/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 2/1/2017 Whole breast Hormonal Therapy 4/1/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 10/2017, IDC, Right, Grade 3, 2/12 nodes, ER+/PR+, HER2- Surgery 11/1/2017 Lymph node removal; Mastectomy: Right Chemotherapy 12/1/2017 AC Surgery 4/1/2018 Lymph node removal; Mastectomy: Right Radiation Therapy 5/1/2018 External: Lymph nodes, Chest wall Chemotherapy 7/1/2018 Xeloda (capecitabine) Hormonal Therapy 7/30/2018 Zoladex (goserelin) Hormonal Therapy 2/1/2019 Aromasin (exemestane) Hormonal Therapy 9/30/2019 Faslodex (fulvestrant) Dx 8/2020, IDC, Stage IV, metastasized to bone/other, Grade 3, ER+/PR+, HER2- Targeted Therapy 8/30/2020 Ibrance (palbociclib) Dx 1/2021, IDC, Stage IV, metastasized to liver/lungs Chemotherapy 1/15/2021 Carboplatin (Paraplatin), Gemzar (gemcitabine)
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Feb 28, 2021 02:40PM - edited Feb 28, 2021 02:42PM by nola70115

There are so many good comments here. On the strictly practical front, I'm already on meds for attention deficit disorder and anxiety and have been for years. The ADD meds just aren't enough for my current level of distraction. My psych doc increased my dosage a bit but there's only so much I can take safely. He's with me that my blood pressure isn't my biggest issue right now but I really don't want to add a heart attack on top of stage IV.

SondraF this really resonated with me: “now its somewhat imperative to make your time worthwhile, however that is." This is still so new for me. I worked so hard to get to where I am, and I have professional goals I've worked on for years that now I can't expect to complete. Giving up those dreams is like giving up a piece of myself.

Plus there's the things I really want to do that frankly I need money for. I can get SSDI, and we will get by, but I really want to take my kids to Disneyworld. I want to finish some of the work on my house that has been half-done for years. I'd like to see the Van Gogh museum in Amsterdam. All those things I thought I had decades to do, but now I've only got a few years. Not to mention the stress of medical costs. I don't want to spend down my assets and leave nothing for my kids. My daughter is disabled and I need to leave a trust for her support.

I think I am the exception to that old saying that nobody dies wishes they had spent more time at the office. I wish I had worked enough to not have to worry about money now.

Age 40 at first diagnosis, 47 now. I've got an autistic teenager and a toddler to live for. See my 2014 blog at snarkforthecure.wordpress.com. Dx 4/15/2014, IDC, Left, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 5/15/2014 Lymph node removal; Lymph node removal (Left); Mastectomy; Mastectomy (Left); Mastectomy (Right); Reconstruction (Left); Reconstruction (Right) Chemotherapy 6/20/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 9/1/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 2/8/2021, IDC, Left, <1cm, Grade 2, ER+/PR+, HER2- Dx 2/22/2021, IDC, Left, Stage IV, metastasized to liver, ER+/PR+, HER2-
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Mar 1, 2021 07:51AM sondraf wrote:

It's funny that you bring up that old adage because I've considered it as well. I wish I had worked harder and made smarter moves in my career. The thing that is really bugging me is the thought that my career will end where I currently am, and I am not happy about that. But golden handcuffs... It gives us the money to save and invest and still live well here, pays my fantastic insurance so I can access US level of care, has a ton of social care interest so if I did go down to long term disability my job would be secure. But I'm not really happy with what I'm doing, and we are far from family. Then it's like we'll what if I'm a treatment outlier and then in 7 years I'm still working there? I think that would annoy me more :)

I always wanted to start and run my own business but got caught on what that would be. Now its something that eats away at me as the one thing I really want to achieve before I go. It doesn't have to be anything major it just has to be mine. So that is something I want to get going in the next 6 months.

But Buttons is right, give the dust time to settle and get the lay of the land, think up contingencies based on when you think you may want to retire and get up to speed on investment options.




"The closer we come to the negative, to death, the more we blossom" - Montgomery Clift Dx 9/27/2019, IDC, Right, 5cm, Stage IV, metastasized to bone, Grade 3, ER+/PR+, HER2- Hormonal Therapy 11/29/2019 Femara (letrozole) Targeted Therapy 11/29/2019 Ibrance (palbociclib) Surgery 11/28/2021 Lymph node removal (Right): Underarm/Axillary; Mastectomy (Right) Targeted Therapy 3/1/2022 translation missing: en.treatments.targeted_therapy.targeted_therapy_medicine.short_options.lynparza
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Mar 1, 2021 05:51PM cyathea wrote:

Hi Nola70115, work has been a life-saver for my mental health. That said, I think the decision to work is very personal. I love my career and without children to keep me motivated, being able to help my clients is what keeps me going.

I also think that the type of treatment and side effects that you have will have an effect on whether you work effectively. I am lucky to be HER2+, so I can take Herceptin and Tamoxifen without too much difficulty.

There are times when I have “brain fog” and it is hard to focus. When this happens, I sometimes just give myself a break and take some vacation time for a half day to get myself back on track. I work from home and pretty much set my schedule, which is another luxury that not everyone has.

I work for a small company of mostly men. Everyone has been very supportive, but I do fear and wonder whether that will end as I go into year 2 and beyond.

When I’m tempted to go down a research rabbit hole, (and I’m not a saint, I sometimes give in), I try to set a timer to pull myself out of the hole. Another technique that I use is to do just one work task before giving in...and often that is enough to get me back into the work flow so that I can defer the urge to research until the evening hours.

MBC is not easy, but I can say it gets easier after the initial shock of it. No one knows how much time we will have, and some people live a decade or more.

At the moment (and this could change with further progression), I feel like I should try to live as much as I can like a normal person with a chronic illness. Work, be as productive as I can, but don’t sweat the dust bunnies.

Dx 6/17/2019, DCIS/ILC, Right, 5cm, Stage IV, metastasized to bone, Grade 2, ER+/PR-, HER2- Targeted Therapy 8/1/2019 Perjeta (pertuzumab) Chemotherapy 8/1/2019 Carboplatin (Paraplatin), Taxotere (docetaxel) Chemotherapy 10/9/2019 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 10/10/2019 Herceptin (trastuzumab) Surgery 3/18/2020 Lymph node removal; Lymph node removal (Left): Sentinel, Underarm/Axillary; Lymph node removal (Right): Sentinel, Underarm/Axillary; Mastectomy; Mastectomy (Left); Mastectomy (Right) Chemotherapy 4/16/2020 Other Radiation Therapy 6/1/2020 3DCRT: Breast, Lymph nodes Local Metastases 6/1/2020 Radiation therapy: Bone Hormonal Therapy 8/21/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy Herceptin (trastuzumab)
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Mar 1, 2021 06:53PM sadiesservant wrote:

Hi Nola,

You have received some excellent advice. First I would like to echo the others in saying don't rush into any decision. You are so new to stage IV that it is completely normal to find it incredibly hard to focus even without the ADD. You need to give yourself time to work through this early phase of appointments and medical decisions to implement a treatment plan, allowing yourself to breathe. When I was first diagnosed as stage IV I went on sick leave on the day of my first MO appointment. I was convinced that I had at most two years (Dr. Google was not particularly encouraging for those with pleural effusion - don't listen to Google). My MO told me that day that he expected me to do well for a good long time.. okay... regroup. Once I had the fluid drained from my lung and a PleurX catheter inserted to make it easier to drain on a regular basis, I realized I REALLY wanted to go back to work. It wasn't like I was spending my time at Club Med (not to mention that it was January...) - staring at four walls was not helpful.

It took me a few weeks to get back to full time as I had to negotiate the gradual return to work required through our health plan but after that I continued to work full time at a demanding job for almost four years. During that time, with the exception of appointments and scans, I logged less sick time than most of my much younger colleagues! Having said that, it did start to become more of a slog by the end of 2019. Part of that was likely due to the addition of Verzenio to my treatment plan. As others have noted, your treatment will play a role in how you feel about work depending on side effects. I was finding that I was completely exhausted by the time I reached my vacation days and then in the fall I had an issue with headaches related to bone mets in my skull and cervical spine. At that point I knew that it was time to consider scaling back my hours. More recently I received more news of progression which may lead me to go on full LTD, now in my fifth year with the diagnosis. That's still a maybe but with some other changes at work it seems like a good time.

All this to say, give yourself some time to figure it out. There are many treatments for ER+ disease that have very limited impact on our day to day lives, allowing us to liver pretty normally. Your body will tell you when you need to consider stepping away. And you will also know when your priorities have shifted to a place where work takes on less significance. (I've gotten to that place where I am losing patience with some of the "stupid" and, quite frankly, my filter is a bit broken!) I also get the income piece which is why I worked for as long as I did. While we all can likely scape by on less, there is something to be said for the freedom that a good income provides. I have been able to stress less about doing or buying what I want which provides its own piece of mind. (And your list of things you want to do sound pretty reasonable to me!)

One final comment, you noted at the beginning of this thread that you were considering moving to a company that had better insurance benefits. While I don't know the American system well, I would be cautious about making a shift until you have checked out how it will impact you. Unfortunately, once you are diagnosed it will be a pre-existing condition on any new policy and you may not be covered. Just something to be aware of.

Please take good care of yourself Nola and don't hesitate to reach out to folks if you have any questions. Sending hugs from Canada! Pat

Dx 4/2001, IDC, Right, 1cm, Stage IIA, Grade 3, 1/10 nodes, ER+ Surgery 5/11/2001 Lumpectomy; Lumpectomy (Right); Lymph node removal; Lymph node removal (Right): Sentinel, Underarm/Axillary Chemotherapy 6/7/2001 CEF Radiation Therapy 12/17/2001 Whole breast: Breast Hormonal Therapy 12/20/2001 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 1/2/2007 Femara (letrozole) Hormonal Therapy 10/22/2007 Arimidex (anastrozole) Dx 1/3/2017, IDC, Right, Stage IV, metastasized to bone/lungs, ER+/PR+, HER2- Chemotherapy 1/27/2017 Taxol (paclitaxel) Hormonal Therapy 3/29/2017 Arimidex (anastrozole) Targeted Therapy 4/20/2017 Ibrance (palbociclib) Dx 10/12/2017, IDC, Right, Stage IV, metastasized to other Chemotherapy 10/21/2017 Xeloda (capecitabine) Radiation Therapy 11/15/2017 External Local Metastases 11/15/2017 Radiation therapy: Bone Hormonal Therapy 1/19/2018 Faslodex (fulvestrant) Radiation Therapy 8/2/2018 External Local Metastases 8/2/2018 Radiation therapy: Bone Radiation Therapy 11/5/2018 External Local Metastases 11/5/2018 Radiation therapy: Bone Targeted Therapy 10/10/2019 Verzenio Radiation Therapy 11/3/2020 External Local Metastases 11/3/2020 Radiation therapy: Bone Dx 1/22/2021, IDC, Right, 1cm, Stage IV, metastasized to liver, Grade 2, ER+/PR+, HER2- Chemotherapy 2/4/2021 Xeloda (capecitabine)

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