When it comes down to becoming a survivor of almost any kind, you need to avoid becoming a speed boat or then you will need a pit bull. For me, it was whatever it took to get the therapy I needed… First thing you have to do is know your insurance coverage. Know your limitations. How much is in your bank account, savings account and who can you trust? Because you will need to plan ahead from now on period. When I was diagnosed with breast cancer, I was on a short term health care plan because I thought someone would hire me with my experience within that time.
Once I was diagnosed and met with an Oncologist that I trusted, he said, “Give me 9 months of your time and I will give you your life back.” It sounded so surreal at the time. Then, it dawned on me that my health insurance would expire in about six months! Together, we worked on a schedule working backwards from each round of chemotherapy to the fact that I would not have enough time to receive all six rounds of chemotherapy, which scared me. Plus, I wanted the tumor out of my body immediately and before my 40th birthday which was days away. So, together we figured that if we started on a certain day, which was Wednesdays, that my insurance would end on the day after when I received a shot of Neulasta, which would now have to be my final round of chemotherapy. It all made sense that day, but after that day, while on Chemo, I forgot everything. Plus, I was recruited to work downtown after I started chemotherapy by ClubCorp since I’d worked for them in the past and always loved my job. The recruiter said, As long as your doctor agrees and your parents agree, we’d like for you to work downtown and you can use the massage room if you get tired and need to take a nap – and we have a kitchen you can use any time you get hungry – we just want you to be happy, take care of yourself and sell memberships. So, I’m working and then, I was suddenly surprised when after receiving my last shot of Neulasta that I was disconnected from any type of care and left on my own. No alternatives were presented to me for care. I was just done. Bye Bye!
On a good note, I can tell you that Neulasta is amazing and it made even the bottom of my hands and feet pink with new cells and no one knew how old I was because I looked and felt like a baby. That stuff worked on me like a charm! I remember having to put up my hand like – Please stop and Talk to my hand – when my Oncologist kept warning me by saying, Now you’re going to feel like a MACK truck hit you when you receive the growth hormone shot of Neulasta – Because it never hit me like anything. It felt amazing. I seriously could not wait for the shot. I craved it. It was like the fountain of youth. It helped regenerate so many millions of new cells and also may be the reason I never got sick. That and everything else I was doing, which is chronicled in these steps for each Pathway!
Back to the story: While going through therapy so quickly, no one could keep up with my out of pocket expenses except for me. Each appointment with each different doctor required more and more out of pocket money when I knew I had met the maximum just days earlier, but I had to keep paying. It wasn’t until I talked to my insurance agent that he explained the effect to me. Sandy, you’re going through this like a speed boat and all the boat docks you are passing are all the other doctors you’re visiting, but your speed boat’s wake doesn’t hit each dock until after you’ve passed. It takes them some time to catch up with your progress so they don’t know you’ve exceeded your out of pocket expenses. But what now? I asked. That’s when my spreadsheet of daily healthcare costs became a part time job. As the bills came rolling in, I noticed that my insurance carrier was trying to keep up, but there was some overlap with my primary hospital where I was receiving chemotherapy. In comes my Pit Bull. This person, who will remain nameless, was acting as my agent in this process and after some time and details from me, had to keep pushing for a refund. Yes, I said that word. My hospital actually had to write me a check for around three-thousand dollars in over paid, out of pocket fees. And let me tell you that I had to call a few times and finally sat on them until I had to physically go to the hospital myself and pick up the check. Hospitals are businesses and they, back then, did not issue refunds like most healthcare providers do today. Remember, this was in 2007 and it required having a Pit Bull to get the job done.
Point is, that you have to watch out for yourself. Only you know the truth. And no one else can really do this for you. Not only when you are sick and everyone else is footing the bill, but especially then! Start a spreadsheet, keep your receipts, check the mail, compare the numbers for each provider and sub provider. If something doesn’t make sense, then call your insurance carrier and ask about it, and then call the provider to figure out who owes what and to whom. Being a speed boat is one thing, but having to throw a flag when you are being overcharged is another issue that requires your attention and effort. Like I said, I went and got the check myself!
Later, when I didn’t have insurance, and my Pit Bull was searching for resources to get me into radiation therapy, since I had a lumpectomy and needed it to increase my overall survival rate, it was suggested by Komen that I negotiate a rate with my hospital. This news made me sick to my stomach. I said, with disgust, You want me to negotiate my therapy? It just seemed so frustrating just to get the therapy I needed besides being well enough to withstand the treatment itself. It was actually during a networking event I hosted downtown that had exactly 169 attendants at the Plaza Center and one by one I met every single person and it was the last guy, who wasn’t wearing a name tag that said, “I’m new to Houston working at MD Anderson Cancer Center as a RadiolOncologist” that surprised me. I took off the hostess mask and said, “Here are my stats, I had a lumpectomy and five rounds of taxotere, adriamycin, and cytoxin and now I need radiation but I can’t figure out where to go without health insurance, what should I do?” The doctor said, “Call MD Anderson on Monday and get in, because statistically you have exactly six weeks to get into treatment before your overall survival starts to diminish because with a lumpectomy and chemo, you have to have radiation – I can’t believe no one told you that – when did you receive your last chemo?” Again, I had to look at a calendar and it was about four weeks since my last chemotherapy which meant I had to start within two weeks.
On Monday I called MDACC and they said, “Please deposit ten thousand dollars into our account and we will start testing and treatment for you.” I kept telling them that I had already had surgery and chemotherapy and couldn’t afford it nor did I have any money. And that is when my Pit Bull called and said that he could not find any resources to help me with my therapy, because I had already started with my cancer center and even trying to get a Gold Card and into free services would take to long and they weren’t even available until months from now. So, when the lady called from Komen and told me that I needed to contact my cancer center and negotiate a rate for radiation that I thought I was going to be sick. And sick for the first time since I had started chemo! I remember, I was at work when my mother called and I told her what I had found out from MDACC and what Komen suggested, but I had no room to negotiate. Negotiate with what? I was working to obtain healthcare and back then you had to wait for coverage as long as you were without coverage, which meant I was working but my coverage couldn’t start for six months.
A week later, my dad came to me and said that he and my mother had decided to pay for radiation and that I would be starting the next week. I had no idea how to respond. It was all so scary. And I had put it out of my mind. But now I was going to start and that meant I had no idea what to expect, and that is really scary. Your mind can take you for a roller coaster ride and it did! All I knew was that I couldn’t stop the process once it started and had to pick the best time in the day because it would be every day except for weekends and holidays for 35 consecutive sessions. I called them ‘zaps’ because each one was different and this red light turns on when the big ferrari of a machine navigates itself around you and starts administering radiation to it’s point and each area is for a different amount of time. I was so scared that I cried the first time it happened but it didn’t hurt and I barely felt a thing. I just kept praying and tapping my toe mentally as I counted the seconds the red light came on. The first day, my mother came with me and I remember had to pay for all of it up front. Like I said, once you start you are in. That was a surreal feeling as I just sat in the waiting room while they took my mom inside for payment. Then, they walked us into the Cancer Center and showed me how the process would work and for 35 sessions, I was the first or second person every morning before heading downtown to work.
I tried to contact the doctor from my networking party, but I was never able to find him again. He was an angel sent into my work world to remind me that I wasn’t finished with therapy. And that’s how I was able to complete nine months of therapy with six months of insurance.