Saturday, November 16, 2013

Happy Day

I have been up for a couple hours feeling gross going through my 7th maintenance round of ATRA. This is the second to last, forever! Happy dance.

At any rate I am happy to share we finally got hitched! I was a spectacular day. The weather was unreal and family/friends flew from all over in for an intimate ceremony. The food was amazing - eggs, bacon ...hello, delish! And of course my husband was the star of my day.

We have some unreal professional photos on their way. Here is a candid shot for now.

Thanks for sticking by me during all the crazy. The tide has been turning for greatness!

Sunday, June 16, 2013

I'm Feat in Women's Running magazine!

I have been waiting 5 months or so to share that I am featured in the new July issue of Women's Running magazine in a section called Women Who Move. It's a couple pages that feature women who accomplish goals and inspire through their love of running. My story is about how running helped me through my father's cancer years ago and then through my own. Here is the cover and a small snippet of the page.

Me and my amazing friend Shanna when I was rockin' that Gucci!
I have talked a bit about running on here. I do not run as much as I used to but I still love it. So it's my hobby you could say. I suppose I feel a little sheepish being written about when I have not seriously run in over 2 years. Much of my confidence in believing in myself has come through running and being active. It has been a great therapy when I deal with hard times, even when I couldn't run.

I hope you check it out while you're at the grocery store on your next trip. Mike can't believe he's engaged to such a big star! ;o)

Tuesday, May 28, 2013

The Financial Pain of Cancer

Being diagnosed with leukemia at age 27 physically changed me dramatically. I dropped 25 lbs in 4 months, shaved my hair off from chemo, was hospitalized for 1 1/2 months and two other times for neutropenic fevers, leaking spinal fluid and unmanageable pain. I've endured dozens of blood product transfusions, thousands of pills, very painful shots in my stomach, bruises all over my body, nosebleeds, severe headaches and nausea. I went from running 3 miles a day to trembling walking to the bathroom or taking a shower because I was too weak. I became isolated for long periods of time from my friends and peers. Sounds like a grand ol' time huh!. Presently, I am doing well and healthy as you can see. I still undergo maintenance chemotherapy in pill form every 3 months to prevent any straggling cancerous cell growth in my white blood.

Life with and post-cancer also impacted me financially. I benefited greatly at the time of my diagnosis with health insurance that 100% covered my chemotherapy and a good chunk of major medical costs. However, I have paid out thousands of dollars in medical bills over the past year and a half. As I have written here before, I set up advanced directives - paperwork that ensures my medical wishes are handled the way I want and by who I want. I was fortunate to have help from my family and Mike in regards to managing my finances and dealing with insurance, HR, disability or social security disability. But for the most part when I was not sick in a hospital setting, I have managed this by myself. With many tearful phone calls to my mother and father I will add.

It is an overwhelming task to not only recover psychically and mentally from the stress your body undergoes, but to also juggle the multiple sources you are asked to cough up money to. I have found myself in very sticky situations with hospitals, insurance, disability and social security disability where I have been sought after to owe money to. And I am not just talking a couple thousand, I am talking in the $$,$$$ range. I have spent many mornings and nights with my hands on the side of my head wondering how the hell I can fight something or manage it.

Along the way I have learned a lot:

1. Persistence pays off: Many times if I accepted a situation for what it was I could have been stuck paying a very hefty amount. I'll give you my smallest dollar amount example, I was admitted to an ER for a fever and was put in ICU. My insurance company had to be notified within 48 hours of my admission otherwise it forfeited benefits. I was in ICU, so pretty much isolation for 4 days with no phone. After speaking with the hospital over this they agreed that it should have been their responsibility on my behalf to perform this simple task. This process took me about 10 weeks though between documenting dates and information with my insurance and the hospital. In the end I saved myself about $5k-$8k so that was definitely worth the hassle.

2. Document everything: Call times, dates, names, ask for it in writing if you are promised something. This happened, and still does to me but if you are foggy from medication let the person you are speaking to that you're in a unique circumstance and on medication. I'd say 100% of the people I speak with are very sympathetic to that and are more than happy to repeat themselves of explain something twice. Chemo brain and pain meds can do a hell of a job on your brain.

3. Advanced Directives - Have someone speak on your behalf if you are unable or incapable of doing it. It is a humbling experience to admit you cannot do something mentally that you once could, but I highly recommend approaching level-headed and knowing you simply cannot take on all the battles of the world at once.

4. Call in the back-ups: Some of my disputes did not directly involve one party but I roped them in to get a second opinion. Another example, Social Security Disability has asked me to repay all my benefits because I returned to work too soon under their guidelines. I had the opportunity to dispute it, which I did twice. Eventually I mentioned it to my disability company and they said they would be happy to have their lawyers review all my paperwork in order to see if their reasoning was correct. The situation did not ultimately turn out in my favor, which is fine but hey at least I left no stone unturned.

5. Emergency Savings This is probably one of the things young people don't take more seriously. You should set aside 6 months of money that you can live off. Example, I had emergency savings set up prior to my diagnosis. Well as bad freaking luck would have it, my car crapped out while I was in the hospital getting chemo. What a kick in butt huh? But when I owed $1300 for that on top of paying out $500 co-pays or consistent pharmacy bills in the $$$'s a month it was not stressful because I had this money aside for this reason.

6. Insurance Don't shortchange your body. You're worth it (a la L'Oreal)! Insurance is a minor deduction when you think worst case scenario (ie - ME lol).

7. Seek out Help and Accept It. My friends and family got together and raised a substantial amount of money that I used to pay off my medication and bills. Some of that money leftover that I did not feel I needed to use was a pay it forward situation. I used it to help fly my sister and brother-in-law to see his cousin who was diagnosed terminal to say proper goodbyes. I have also used it to donate to other cancer charities -$50 or $20 here and there.
I also applied for patient financial aid and grants nationally from The Leukemia & Lymphoma Society and locally to the The Perillo-Stafford Leukemia Foundation. I also had the option of applying to my sororities Sister's in Need program, but chose not to because I felt financially I was dealing OK with my situation.

Coping with cancer physically, mentally and financially are still things I 
continue to balance and sometimes struggle with. Hopefully you can take 
from this even a small bit to help better manage a situation you, 
a friend or a loved one deal with in the future. At the very least this blog
post has distracted me from a killer headache I have had for 24 hours.