Though my physical existence has changed dramat...Save as Favorite
- I was Diagnosed with:
- Breast cancer 2000, Epithelioid Sarcoma 2005
- Date of Diagnosis:
- March 24, 2005
- Employment Status:
- currently employed full time, though was let go from my last company during treatment process.
- Type and Description of Treatments:
- for most recent cancer: 3 surgeries, 6 weeks radiation and enough drugs to put me on the DEA’s most wanted list
- How do you feel today?
Though my physical existence has changed dramatically I have entered into a new routine and am feeling very well both physically and emotionally.
- Since the diagnosis, what has changed in your life?
It would take quite of bit of paper and ink to share all that has changed since and due to my last diagnosis. For the sake of brevity I suppose the following run down would cover the highlights with purpose. Upon diagnosis I made the decision to end my career as a contract agent in the human aid industry and find a normal 9-5 job with a desk and cheaper health insurance. Needing immediate employment, I was hired by a technology company earning less than half my normal income. Though my boss and co-workers were extremely kind and generous throughout this process I was eventually let go. With mounting medical bills, a failing car, no income and a modest mortgage to cover, life became tougher than ever. I had managed to burn through several decent asset accounts and was facing bankruptcy, unemployment and potentially my right to pre-existing condition if I could not keep up with the COBRA payments. For a girl who has never had consumer debt, school bills, a car payment, or the luxury of a second income for support (I’m not married) this was a tough road to walk. I was at the tail end of my treatment cycle but my second surgery had left me with a chronic physical pain that was unbearable and difficult to treat. I eventually landed on a cocktail of drugs that dulled the pain but left me with a morning “hangover” that made it difficult to see and walk much less safely drive within the first few hours of getting up. Finding an employer that offered a modest middle income salary, a decent health package and a flexibility of schedule proved even harder to find than recent studies have suggested (Mark Twain was right – statisticians are liars!). I eventually landed on an administrative position with a mortgage company who was willing to offer most of the above. With health insurance covered and the flexibility of schedule, I was forced to find a second job just to keep up with the medical debt and added expenses that came with an 80 mile commute and weekly Dr.’s appointments. Staving off bankruptcy, it didn’t take a genius to figure out that the economic woes that currently exist in our country due to the mortgage crisis would eventually leave me without a job, yet again. So – I currently find myself looking for another job, trying to re-finance a house in a terrible lending market with medical dept up to my tuckus and no love life what so ever. Bridget Jones would be horrified! It would appear the past two years have brought me an irrevocable physical and emotional pain that no one ever prepares you to survive but the truth is the challenges I have graced since my last diagnosis have given me a confidence and expectation of life I didn’t realize was possible for me. Of all that has changed in my life, this is what I would consider the most valuable and evident.
- What is going well for you right now?
My sense of humor and over all attitude toward life. With all that has gone wrong, I realized that “That which does not kill us, makes us funnier!” I have found a boldness in spirit and execution for myself that I had so admired in others for many years.
- What is not going well for you right now?
Finances. It will take me years to recover from two diagnoses with cancer in the span of 5 years and in the prime of my career… if I ever even do. Bankruptcy still looms and the amount of out of pocket medical expenses I incur each year is the only thing about this experience that is not funny. I find myself teetering on the verge of definitive poverty, knowing full well once I cross that line it’s nearly impossible to bounce back. Our country makes it very difficult to weather a major health care crisis. If I, Ms. “Save all you can” have always lived within my financial means, am able to fall into such a financial vortex - I can’t imagine how hopeless life appears for the average American with nearly $10,000 worth of consumer debt, school payments, a family, mortgage and car to pay for is able to survive at all.
- What has been the most challenging thing about having cancer?
Besides the money…feeling alone. In his song, Piano Man, Billy Joel sings, “they’re sharing a drink they call loneliness, but it’s better than drinking alone.” I never truly understood the nuances of that line till recently. Though I have plenty of friends and family to support me through this process, I still feel alone. I’ve always been independent and figured if love and marriage were meant to be, they would happen in their own time. But for the past two years, life would have been a thousand times more bearable to know someone was at home waiting to stay up with me all night while I was sick or understood the fear I felt when dealing with a cancer that statistically has no response to treatment. There’s something oddly sweet and comforting about knowing someone still thinks your sexy even while they’re picking crusty vomit out of your hair. If someone were there to share in the details that no one ever really talks about I think I would have been able to deal with the loneliness a little better than actually being alone.
- When difficulties overwhelm you, where do you go for support?
The liquor store! Just kidding…. Actually (and this is probably not the healthiest approach - but to be perfectly honest) I hole myself up in my room and attempt to sleep it off. Usually the feeling goes away over night but I am sad to say this has been know to last for several days to the detriment of my “sick day bank.” Thank God for delivery! If that doesn’t work, I rent the funniest movies I can find and reward my feelings with junk food by throwing a pity party with a good friend, till I feel gutsy enough to pick myself up by my boot straps and face life, once again.
- How have your long-term goals or life goals changed since diagnosis?
I no longer feel like the girl who has to get out and conquer the world. I no longer equate my identity by what I do for a living, realizing that I am more than the sum of my parts. My desire for family and career are also completely different than when I started out so long ago. Early retirement is probably not going to happen so I’ve recently decided to stop slaving away for someone else and to start looking for ways to work for myself. If I’m going to be working for the rest of my life, it might as well be on my own terms. I’ll have to let you know how that one goes in another two years.
- What is your work arrangement right now? What are your hours?
I am currently employed full time, working from 11:30 to 8:30pm on average. Unfortunately, due to market conditions my employer is downsizing and I will no longer be employed in another month if I cannot find work elsewhere. Again, I’ll have to let you know how this one goes.
- Since the diagnosis, what has changed in your work life?
Other than the need to have flexible hours and an above average health care plan, my willingness to work 60 hours a week. My attitude on life and career is the biggest change at work. I no longer wish to sacrifice a social life for the small possibility that I may be able to move up the company ladder and earn a decent salary. I’m OK with working a job society would consider “unskilled” or mediocre just for the opportunity to spend more time on relationships.
- What has helped you continue to work the most?
A special relationship with tier 1 opioids and understanding employers. I have been extremely blessed with employers who see the value I bring in spite of my physical constraints. I cannot believe most employers operate with a draconian expectation that in order to bring value to your work, you must be sitting in your desk from 8 to 5.
- What advice do you have for others trying to work through treatment?
If you don’t have a good sense of humor (potty humor in particular) go out and get one immediately. Borrow, buy or steal one, cause you’re gonna need it! This is your opportunity to find out what you are truly made of. Learn all you can, delegate all you can, and fight as hard as you can for the best care available. Remember that Dr.’s are human, nothing is absolute and that even though you don’t have control over your diagnosis, you do have control over the process – there is dignity in this knowledge.
- How have you dealt with any side effects of treatment?
Kicking, screaming and throwing my food is always a fun first approach. If that doesn’t help then indulging myself with anything I think might help relieve whatever side effect I was struggling with. I once went almost 5 days without sleeping because of the pain, so I decided to build a make shift bed on top of the washer and dryer and set the timer on 2 hours after I over heard my sister-in-law talk about how this helped she and my brother get their new baby to sleep. Other than falling off both machines at 4:00am in the morning – it was the best night sleep I had in months! Hey – desperate times
- If "today's you" could give advice to "day-of-diagnosis you," what would you say?
Don’t be an idiot – accept help when it’s offered... Especially when you know you need it! Don’t be an idiot (part two) – breaking up with Mr. Wonderful just because you were afraid he was going to beat you to the punch wasn’t the smartest decision you ever made. Turns out, he wasn’t that freaked out about picking crusty puke out of your hair.