Working Through Treatment

By Matt Goldman

3 min read

I just watched a video from Amanda Brunson, a Blood-Cancer.com contributor. She talks about working while not feeling good. It's a real challenge and a real balancing act. I feel for her and others who are dealing with this. It reminded me of my challenges at work shortly after I was diagnosed.

Burning through my sick leave

When I was diagnosed with myeloma in 2011, I really hadn't been sick before, so I had built up a decent amount of sick time at work. But being in and out of the hospital and feeling horrible meant I burned through all my time quickly. But I needed to work full-time in order to maintain my insurance and income. Bills don't stop just because we're sick. But for several months, there was no way I could work a 40-hour week. We were struggling to find a treatment that worked and I was sick, with a capital S.

Getting by with help from my co-workers

When I ran out of time off, I was pretty panicked, I didn't know how I'd pay my mortgage and bills and insurance premiums. Fortunately, work had a program where coworkers could donate their sick time to me, allowing me to work part-time and take care of my health. An odd thing about the program is that the donations were anonymous and I wasn't able to directly thank people for helping me. This program worked great. After a while, we found a treatment that stabilized my disease and I started to feel slightly better. But I was still doing two infusions a week and was totally worn out.

Unclear workplace rules

I say the program worked great -- until it didn't. One day, I'm sitting at my desk and I get a call from human resources. They tell me that I can't use the donated time anymore, that they've been misusing the program. They say it's only applicable for employees who are out full-time. Part-time workers suddenly couldn't work part-time and use donated time. Crazy right? They changed the rules on me.

I was irate and I was scared. Now what?

I met with my department's HR and they said it's out of their hands. They asked what I wanted, and I told them I wanted to stay alive. I worked for the city, so my HR placed the blame on the city's HR. I tried to meet with the city's HR and they wouldn't respond to my calls and emails. I asked wouldn't they want me working some of the time, rather than none of the time. I got nowhere. I involved my union and they were no help. I asked my bosses to help and they refused to help. No one wanted to make waves over this issue.

Trying to work full-time

Meanwhile while trying to figure this out, I started coming in to work full time. I'd take naps in a friend's office at lunch or on my breaks, lying on his floor using my coat as a pillow. My treatment included a massive dose of steroids. So I'd yell at people at work. Roid rage is real. I'd then send apology messages to those people. The situation absolutely was the worse. I pondered getting an attorney, but my bosses and my HR put the fear into me and I stressed about losing my insurance and income.

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Giving up and going on disability

Eventually I gave up the fight, I was feeling a bit better every week and accepted the fact that I'd be working full time while feeling horrible. A few years later, I was able to retire and I got out of there as soon as possible. Am I bitter? Yes.

Do I feel better since retiring and going on disability? Absolutely yes. I am fortunate I was able to take this route. In hindsight, I wish I had pushed the issue more. I wish I had made it this more of a public issue It just wasn't right what they did to me. And it's inevitable that someone else will face the same issue some day. I'm doing a lot of work on my mental health lately and addressing regrets is a big one for me. I need to learn to move on and move forward. But as they say, I can forgive, but I might not forget. And I even need to learn to forgive myself for my decisions. This is the biggest challenge for me.

But to Amanda and everyone else struggling to balance health and work, know you're not alone. For what it's worth, I'm sorry for these challenges.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Blood-Cancer.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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Maria Valente Moderator
Bitter. Yes. I totally relate to your experience. I had used up all my sick time and vacation time for appointments, tests and scans. I felt like crap. I vomited during my breaks and maintained my activity at work to the detriment of any activity outside of working hours. We had always been a two income household and I could not imagine us surviving without the income my job provided. Twice in the ten years after diagnosis I had to ask for unpaid time off for treatment. For this I was told I was "unreliable". Meanwhile, when I was able to return to work I was told that things did not go well in my absence. That made me feel even worse. I thought I had done everything right. My net pay was close to half my gross pay due to the deductions. My employer and union were very concerned about skyrocketing insurance rates. At no time did anyone recommend I use the benefits I had paid into. When I was pulled from work by my oncologist I reached out to a lawyer and a disability non profit organization. Without their guidance I would not have received the benefits I have today. It was a long drawn out experience, but I feel grateful to have been able to navigate the system. Like you I feel very fortunate to be retired and on disability. My activity is based on what I can do and not on what I have to do.
Amanda Brunson Moderator & Contributor
💔💔💔🫂
Amanda Brunson Moderator & Contributor
Yes‼️the struggle is soo REAL 😩😭 I feel like jobs can help out more to saving someone’s job especially when they know the employe is dealing with a life threatening medical situation. Sometimes I think 💭 to myself what happened to caring about the people genuinely. Of course your coworkers will come and help, but what about the company itself. You give them so much time of your life… I would hope that they would see a hard working employee. Unfortunately, that doesn’t happen a lot of the times even with amazing job effort😔😣😩😫
1. Maria Valente Moderator
 <inline-mention username="Amanda Brunson" user-id="4145474"/> Very true. You can even be in the same field for decades with a proven track record. You can be paying into benefits for those decades thinking those benefits are helping someone else in their time of need. That's what I thought. Truth is, there are influences outside our work environment that are creating focus elsewhere. Insurance rates seem to continually expand no matter how much we pay into them, the cost continually rises. I decided that I was not responsible for that. I chose to fight the system. It takes a lot out of a person.
Ramae Hamrin Moderator & Contributor
I was teaching full-time when I was diagnosed and have never been able to go back. I had the luxury of a broken femur at the time of diagnosis, so it wasn't too much of a struggle to get disability at the time. Thankfully, my employer also offered long-term disability, and I got to use sick bank time, which took me to the end of the school year. I feel so blessed to be able to stay home and rest, and I honestly don't see how people going through these treatments can work at all. Some days it's all I can do to drag myself out of bed. I don't think I would still be here if I had to force myself to get through 40-hour work weeks. Disability saved my life, and although I don't care for the 'disabled' label, I prefer it over the alternative. 
1. Maria Valente Moderator
 <inline-mention username="Ramae Hamrin" user-id="3651272"/> I am so very glad to hear this. My situation depended on bloodwork that was continually changing. It went from chronic to acute twice before I was taken seriously. I agree with you, being able to truly take care of ourselves is a life saver.
Yolanda Brunson-Sarrabo Moderator & Contributor
This is the exact reason many were in the dark about my struggle. I festered through the many storms and it wasn't easy but I knew that the laws and rules say one thing... reality can be brutal. I've said it before but saying again, so sorry you've had to deal with this craziness. It's not easy for those who are stuck with making these decisions of being truthful and telling an employer and get backlash for being honest about the situation.
Matt Goldman Contributor
It's a real shame that so many of us have had these challenges. Here are a couple of organizations that can provide guidance and help cancer patients know their rights. There is Cancer and Careers. <a href='https://www.cancerandcareers.org/en' target='_blank' rel='noopener noreferrer ugc'>https://www.cancerandcareers.org/en</a> and the Cancer Legal Resource Center. <a href='https://thedrlc.org/cancer/' target='_blank' rel='noopener noreferrer ugc'>https://thedrlc.org/cancer/</a>
1. Maria Valente Moderator
 <inline-mention username="Matt Goldman" user-id="3648536"/> I found non profit organizations extremely helpful in helping me to understand what was best for me, in accordance with doctor's orders. I took notes and all conversations were private and for free. It was an eye opening experience.
Angie Netterville Moderator & Contributor
I honestly don't know how I made it through my first bout when I was off work for 6 months. I was a single parent with 2 teenagers. My daughter was in her first semester of college. Somehow we made it, and we learned we could live with less. Worrying about covering expenses is the last thing a cancer patient should have to do! I'm sorry that there have been so many struggles with this for all of you.
Ann Harper Moderator & Contributor
I felt very fortunate because, like you, I had a lot of sick time. I used it when necessary and my job also had a sick time donation policy, but I didn't need it - thank goodness. Recently I retired and that has made life so much better. All jobs should have a policy for those of us that get cancer, but unfortunately, some do take advantage and ruin it for everyone else. I'm glad you are able to be home but feel bad you had to make choices you weren't ready for. Thanks for sharing your story. Hopefully, it lets others know they are not alone. Ann (Blood-Cancer.com Team member)
Ann Harper Moderator & Contributor
As I reread what I wrote, I want to include that a donation of sick time should be available to anyone that needs it, not just for cancer. Unfortunately, there are so many other issues that need time off and they go without sympathy from our bosses and it's too bad. Thanks for putting light on this issue. Ann (Blood-Cancer.com Team member)
Cyanne Member
I contract to a law firm and have my own practice. I have Zero benefits. While I bill hours, that doesn’t mean I get paid. I’m billing fewer hours and still not getting paid. (I got $1992.50 from July 15th to today for my employment.) I don’t qualify for disability until I’m put in hospice per social security rules due to my profession and education. I don’t qualify for state aid because I make more than $433 per month on average through the calendar year, as I am single with no children. I live almost entirely off of donations. 
1. Cyanne Member
 Yes, education and career DO affect eligibility. SSD is based on ability to work. If you have a JD or an MD, you have to either be both blind and deaf or you have to be in hospice. 
2. Daniel Malito Moderator
 Yes the rules of disability and the like are draconian sometimes. I know because I have been through it all myself and it is Byzantine and unforgiving. I had to retain a lower myself when I started disability, and got denied at first, and then eventually approved. It helped, but it wasn’t the Godsend I was hoping for. Oh well, we go on day by day, doing the best we can. Keep on keepin’ on, DPM
Catskills101 Member
This problem is real and is horrible! Of course, for the employers, it all comes down to budget considerations.
1. Daniel Malito Moderator
 The bottom line is it ALWAYS comes down to the bottom line. 😝 Keep on keepin’ on, DPM
CommunityMember871259 Member
Hi, my name is Dave and for the last couple of years I've been feeling a little bit lazy but mind you I'm 81 years old. Several of night checkups showed my blood in hemoglobin, red blood cells and white blood cells all below acceptable levels. Finally my GP sent me to a hematologist and oncologist same person. Anyway this gentleman doctor is retiring soon and doesn't have his privilege at any of the hospitals that he looked at my blood results and my age and just told me to go out and have a good time not to worry about it. But one day I thought that I could give blood that might help so I went down to the Red Cross to give blood and she told me to get to see my doctor as soon as possible. So I went to a walk-in clinic and they sent me to a hospital nearby where they did a complete makeup on my blood and finally diagnose me with MDS. To make things short I still feel good that I will be starting a z a treatment real soon. I must tell you that I exercise five times a week and have recently had sciatica and my heart doctor wants to see me tomorrow. I'll keep you posted
1. Dennis Golden Moderator
 Glad to know you found a treatment and agree some exercise helps both body and more importantly my mental outlook . Dennis(Blood-Cancer.com TEAM) 
2. Angie Netterville Moderator & Contributor
 It's so great that you're able to stay active, Dave. Yes, please keep us posted. We're here to support you! Angie (Team Member)

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