Ashley T. on March 11, 2015
I was Diagnosed with:
Kidney Cancer with Autoimmune complications- SLE Lupus, MS, Fibromyalgia
Type and Description of Treatments:
Left nephrectomy. Chemo is not effective for kidney cancer, it's surgery & hoping for the best.
How do you feel today?
I feel amazing. It took a lot of time to get here. It was truly a journey. I hit lows, highs & am now riding high. Cancer helped me become a better person. Attitude was half the battle for me. Illness did not define me but it has changed me for the better.
Since the diagnosis, what has changed in your life?
I have learned to make my voice heard. Before cancer I was always afraid to speak up for myself & with a cancer diagnosis I had to learn quickly that you are your own advocate. This goes with friends, family, doctors, co-workers. Whatever the relationship you have, learn to express what you need. Before cancer I was less able to do that, so it has been a positive spin on things.
What is going well for you right now?
Life is fabulous. There was a time I didn't think I would be myself again - & I'm not - I'm better & lighter 1 kidney. But the experience has enriched my life in many ways. Gifts come in many forms - even bad news could be exactly what you need. It's all about what you let it mean to you.
What is not going well for you right now?
I still face frustration with having so many doctors. It becomes easy to blow off one checkup, which turns into 2 & so on.... It's hard to have an oncologist, nephrologist, urologist, and rheumatologist and still just be a normal mom with headaches & a kid with a fever or still needs their teeth cleaned. I have to stay focused to make sure that I make time for all the things I need to do, & not let myself backslide into letting small issues become big ones.
What has been the most challenging thing about having cancer?
I think learning to put yourself first was hard. I was always concerned with making others comfortable. I used humor, deflection or just avoidance. You have to be your best you when facing a caner diagnosis & that's hard to do sometimes, but ask for what you need so you can face each day with the support you need.
When difficulties overwhelm you, where do you go for support?
Online! Cancer or autoimmune issues are complicated. For me, informing myself is key to me feeling good. Of course my friends, family are here for me but it is something you can't always express - or want to burden someone with. Plus, in a community like C&C, you can talk to others who get it!
How have your long-term goals or life goals changed since diagnosis?
Absolutely! I was in a bad relationship, unhappy at my job, stressed, overworked, unhappy, then cancer came. OH BOY! Could it get worse? But to my surprise cancer was the catalyst for me being more assertive in all aspects of my life. It taught me that you shouldn't wait until its a 911 situation to make changes & think of yourself. Stop putting yourself at the end of the list - as a single mom that happens a lot sometimes - but to be my best me for others, I have to make myself a priority.
What is your work arrangement right now? What are your hours?
I work with a great company who promotes working from home. When I started I didn't mention my health issues right off the bat. But as issues came up I did disclose more. We practice ROWE (results oriented work environment). As long as I am doing my job, they don't care where I do it from. I know not everyone has that luxury, but more companies are adopting it. I don't always work from home, face to face is important even if the majority of my work could be done digitally. But on the days I need it I am glad it is there. I am no good to anyone sitting in a cubicle if I am sick or having a lupus relapse. But if I can work from home with some comforts & less energy expenditure I can accomplish work & feel better - everyone wins.
Since the diagnosis, what has changed in your work life?
I have learned to look at work with the question: Will this matter in 5 minutes, 5 days, 5 months? And not worry myself on the things that may not matter as much. As a perfectionist I always did my best on everything all the time. I've learned that sometimes the 5 min job is as good as the 5 hour one on the things that don't have a huge impact. I'm not compromising quality or deliverables, but I realize that the agenda I pour over for 3 hours for a 30 minute meeting can probably slide a little. :)
What has helped you continue to work the most?
Getting to a comfortable place with work where I can be open about my lupus & other health issues. When I start getting run down or overworked it can exacerbate a flare. Learn to say no, slow down, everything will get done but I know if I push it too far it will bite me in the end. Make lists, what needs to get done, what is the real priority. Learn to not let everything be a "fire". Learn to say no sometimes. Be clear about expectations, what is good enough & what exceeds expectations. Where is a place you are comfortable with. Be flexible & breathe.
What advice do you have for others trying to work through treatment?
Ask for a break when you need it - do not push yourself too hard. Work with your employer, even if that means adjusting hours, schedules, role, or location - this will not last forever. Show you are committed but don't overextend yourself because your body needs rest and care & it will let you know when you aren't listening. I've made that mistake & you pay 2x negatively. Listen to yourself, if you need a break take it! If you can't find a way to get you the extra time, sleep, whatever you need via creative means but by all means listen to you!
How have you dealt with any side effects of treatment?
I was diagnosed with kidney cancer & several immune issues at the same time. Depending on who you talk to they are linked or coincidental & just all came to a breaking point at the same time. The autoimmune issues compounded because of cancer, steroids, and meds. It was a mess. It took me a long time to recover - far after they took my kidney. I educated myself, learned to accept what I had to do (meds yuck) & work on what I could do to make things better on my own (diet, meditation). Food has been a huge course change for me. After several years of the status quo, lupus relapses, white spots on my brain, hazy months or lupus fog, I got serious about my diet & it seems to be working. That may not always be the case but it is right now. You have to learn to arm yourself with whatever needed because the path will not always be defined. Be your own advocate & be the expert on your issues. Ask for help when needed.
If "today's you" could give advice to "day-of-diagnosis you," what would you say?
It will be ok - even when it is bad it is okay. Get up, get dressed and try to feel good even when you don't feel good. Whatever that means for you, a manicure, a massage, a Netflix marathon, a pair of heels. Whatever you can do to give you the edge even o the worst days. It helps you remember who you are. Do not let the disease define you.