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Kathi K. on January 28, 2011
I was Diagnosed with:
working 80% of full-time
Type and Description of Treatments:
Partial mastectomy, no lymph node involvement, radiation, one year of tamoxifen
How do you feel today?
Basically good. Tired & out of shape, but finally out of the 2+ years of long-term post-treatment fatigue.
Since the diagnosis, what has changed in your life?
Continue to be cancer-free. Now, I am slowly trying to put the rest of my life back together. Hope to lose the weight I've gained, get into better shape physically. Mentally, now that the fatigue has lifted, my mind feels sharp again, but I'm still not feeling like I'm on top of things. A lot of things have gone by the wayside for two years, and it will take time to pick up all the pieces.
What is going well for you right now?
I feel more on top of the complications of work. Emotionally, I feel great, I love my friends, I feel like I have a lot of support from them. I'm adjusting better to making less money than I did when I could work full-time, and my finances are in decent shape.
What is not going well for you right now?
I've gained weight during the past 2-1/2 years, mainly because of coping with fatigue. I'm probably in better shape than the average person, but not in the kind of shape I was before cancer. I hope to get back to the more vigorous exercise I was used to. I continue to have pain & tightness over what's left of my right breast and throughout the shoulder because of radiation. It's still an effort to come home from work & deal with the ordinary tasks of life, like the house, laundry, etc.
What has been the most challenging thing about having cancer?
The most challenging things about having cancer has been that I feel I was never really informed adequately about what my treatment options really were and what the potential long-term side effects might be. I didn't get much help with those long-term effects from my cancer doctors, and had to suffer through a lot of problems during my first year post-treatment that could have been ameliorated if I'd been treated better by my doctors. I had to find out so many things on my own. I had to research & discover for myself that cancer-related fatigue is a common & difficult long-term problem, and seek treatment for it. I had pulmonary problems, joint problems, tissue cording in the lymphatic vessels from my shoulder to my elbow and in my armpit, none of which I was warned about. Meanwhile, my daily life still feels disorganized.
When difficulties overwhelm you, where do you go for support?
Thank heaven, I have lots of support from other breast cancer survivors, and I have great friends. I've sought individual counseling when I needed it.
How have your long-term goals or life goals changed since diagnosis?
I was a ball of fire before I was diagnosed. In addition to an active career, I was active as an artist, won awards, got my work into numerous juried art shows. That's all been on hold. I was fit & 25 pounds slimmer. I'm hoping to get back to making & showing my art again, getting back in better shape, having more fun, feeling more organized.
What is your work arrangement right now? What are your hours?
I work 30 hours a week, which is 80% of full-time. I work three and a half days a week, which is about all I can manage. I had to cut way back for a while, and I think I went back to work too soon. It took me a long time just to get back to being able to handle 30 hours a week. I'm fortunate though, in that I work in a field where I have a lot of flexibility with my hours, and basically, I manage my own schedule.
Since the diagnosis, what has changed in your work life?
My hours, my ability to engage in extra career-related committees & public education activities related to my work, which is in health care. Work has had to take a back seat much of the time while I've dealt with doctors visits, tests, fatigue and exhaustion, and numerous other concerns.
What has helped you continue to work the most?
Having work flexibility with my hours has been key. Without that, I don't know what I would have done. I have bills to pay, so I've had to scratch out as much time as I could, and then pay for it in fatigue. But I work in a field that's in demand, so my employer needs me.
What advice do you have for others trying to work through treatment?
Learn your workplace rights first of all. People can get treated really badly by employers & not know what they're entitled to. Also, don't push it. I could not work during treatment & I went back to work too soon. I went back full-time too soon as well. But I was entitled to adjust my hours on a partial disability basis & still retain my benefits. Flexible hours, telecommuniting if possible, all those things help. I can do some of my work from home, which helps.
How have you dealt with any side effects of treatment?
Slowly and laboriously. I had to dig and dig on my own to find out what was going on with me and how to deal with it. My cancer docs were pretty useless, I'm sorry to say. My primary care doc, thank god, has been great. But you really have to arm yourself with information. It's out there, but you have to hunt for it.
If "today's you" could give advice to "day-of-diagnosis you," what would you say?
You do NOT have to make your treatment decisions all at once. Try to step back from the panic and take your time. Bring someone with you to your appointments. Ask for a nurse navigator, ask for all the information you can get, do your research about treatment options and short and long-term side effects. Informed consent does not really happen much of the time in health care. If I knew then what I know now, I would have made different choices and avoided radiation altogether.