Sue B. on April 16, 2010
I was Diagnosed with:
Type and Description of Treatments:
Mastectomy. Six months of chemo.
How do you feel today?
I do have what's called Post Mastectomy Syndrome, which is neuropathic pain of my chest wall, axilla, and at times also goes up to my shoulder blade. It's been pretty difficult to manage. I am on multiple medications. I have gained 45 pounds and have more pain from that. I think I would manage much better if I could work part time, but no one seems to hire anyone as a RN Case Manager anymore Part time. It's harder for me to keep up, so I work more hours to get done on a fixed salary.
Sorry for such a depressed sounding post, cause I am quite happy to be alive. I love my work, it just does me in.
Since the diagnosis, what has changed in your life?
I no longer think of myself as healthy. I have chronic pain. I have gained 45 pounds. I am really happy to be alive; everyday I am more aware of how fast my life could change from a diagnosis of mets.
What is going well for you right now?
I am going on vacation Monday. I have the money to be able to go places, and do things. My husband retired January 1st and we are together more than ever. My cancer has not spread to my knowledge. My kids are grown and I am happy with the people they are.
What is not going well for you right now?
Pain, weight gain & depression.
My husband was diagnosed 2 years ago with prostate cancer. We both worry about each other. I miss the intimacy we had in the past; he is presently impotent.
What has been the most challenging thing about having cancer?
Wondering if I will ever grow old.
When difficulties overwhelm you, where do you go for support?
To my friends and family.
How have your long-term goals or life goals changed since diagnosis?
I live more for the moment. I don't wait for things I want if I can help. I don't know if I can have long term goals.
What is your work arrangement right now? What are your hours?
I work full time, 5 days a week. I am salaried. Normally I work 830pm to 530pm, unless I am behind. I probably average about 45 hours a week.
Since the diagnosis, what has changed in your work life?
I had been laid off a little more than a year before my diagnosis. I was hired as an RN Case Manager by the insurance company that bought out my company, but it was a whole new job as they did not absorb any of the staff into their company. They really did court me, told me how great my qualifications were. I worked for a subsidiary of theirs during the transition, as they requested. Because of this, I was only on their payroll for 11 months when I was diagnosed. They did agree to grant my FMLA rights, because I was working to close my previous company down.
From the start of my chemo, I had horrible nausea, necessitating constant meds which made me quite tired. By the time I had been off work for 3 months I was not realistically able to return; But I was told I would be "severed" if I did not (despite the fact that the disability insurance coverage was approving the time off). I tried to go back PT. I first planned to work three 8 hour days a week. By the time I was there for an hour, I was exhausted. I ended up working three 4 hour days.
I continued on the chemo and missed 2 days for the last 2 weeks of chemo. I then called in a total of 2 more days over 4 months total. I was not making any progress in increasing my hours, as they expected. I was never given any warnings. I called in sick one day as I was having a CT of the head to r/o mets to the brain. The next morning I received a voice mail; a corporate HR person I'd never met. He had left a message saying, "Due to your excessive sick time, you are no longer an employee" They told me I could submit a resume once I was better. Hah! I was actually surprised, I guess I was rather naive when I reapplied and they didn't pay any attention to me. I filed for unemployment and they tried to deny it; I won my appeal. I got a new job, with very little hair, and not much more energy. I waited a couple of months and went to an attorney who said they had actually followed the law. She didn't think a Civil Rights lawsuit would be successful as they had been smart and took all the right steps. She suggested I file the complaint on my own, on-line. I did; they won. I appealed and took a survivor with me to our Statehouse and testified; I lost. I still cannot understand how anyone could have treated me that way. I am no longer naive. I am frightened I will lose my job one day due to chronic illness and the pain syndrome I have now. I guess I may be on disability one day; even though I still have a brain that is eager to learn and to help others.
What has helped you continue to work the most?
My family. My continual urge to learn and to continue to help others. The need for money to pay for kids' college, cars, house payments, multiple medication co-pays!
What advice do you have for others trying to work through treatment?
Watch your back. Document everything.
How have you dealt with any side effects of treatment?
Presently, I have lots of pain due to the Post Mastectomy Syndrome. I am in Pain Management. I keep busy, and try to keep active in Political things. I was active in making phone calls to help get the Health Care Reform bill passed.
If "today's you" could give advice to "day-of-diagnosis you," what would you say?
Wow, that is hard. I guess I would say, whatever happens you have lots of support to make it through whatever you need to do. You are a strong woman.