My Scan is Stable...Why Am I So Gloom?
Everyone knows all to well the story leading up to scan day. We are anxious. For me, it had not always been this way. Some weeks I forget I have scans coming up. Well, I did forget until recently. My friend had a recurrence after 18 years. Not only was this just a recurrence, but after 18 years of no cancer, it came back with a vengeance. His pet scan lit up like a Christmas tree.
Fighting for my right to coverage
I've surpassed six years and going on my 7th, still on my first line treatment. No thanks to my insurance company, who in 2013 tried to deny life-saving radiation. SBRT to the lung was not considered medically necessary for stage 4 patients. I had to take to twitter, one of the most powerful social media tools for grabbing a companies attention.
My radiation was complete and I received a bill for $117,000 for the treatment due to the insurance denial. Well, you can't get blood out of a turnip and I knew I was most definitely a turnip. So, I fought back. I had the president of the insurance company call me. We did a peer to peer review and their peer agreed with my hospital, yet they still resisted paying. Once again, I took to twitter. Somehow the message got across or they went ahead and approved it to shut me up. I'm good with either one.
My treatment catch 22
Now, SBRT to the lung is a normal part of the treatment process. Somehow I like to feel I was a pioneer to that, but probably not. The cancer had been regressing my first year until September 2013 when my primary tumor decided to go rogue. Being the only active tumor, we took drastic measures and radiated it. I still have scar tissue in that portion of my partially collapsed lung. I am fine with this as I know now that the cancer stopped spreading and I'm stable. But herein lies the catch 22.
The cancer came back before while I am on this medication. What is to stop it from returning? Yes, we radiated the primary tumor, but who knows what could be floating around there. Every single ache, pain, scratch, or other weird things that go on with my body make me wonder if the cancer is back. I know many patients like this. We have one foot on this earth and one foot in the grave. We never know when that other shoe will drop.
Live for today
So, my advice? Live your best and fullest life. You'll never see a U-haul behind a hearse. People ask, "Don't you want to make more money and have finer things?" Well, the answer is, as long as my daughter is healthy and happy and as long as I'm doing well, I don't care about the money or anything that goes along with it. I want to pay my bills (which are so high insurance wise) and LIVE my life away, not work it away. Cancer taught me to stop and smell the roses. There is no guarantee we will be here tomorrow, live today.
Why do I get so gloom after scans?
I've gotten a little off-topic. Why do I get so gloom after scans? Well, scans are a reminder that we are all terminal. It's inevitable that we will all leave this earth at some point. I just want my time to be a long time. But, I'm also aware you can't always get what you want. So I build myself up to some crazy expectation that everything in my lungs has disappeared and this was just a bump in this life. But then realization sets in and I know nothing will ever be the same.
There are silver linings, like spending time with friends and family. Having cancer is a full-time job. Between scheduling appointments, insurance approvals, applying for aid, and working any little side gig that will help just pay my bills. I don't believe I need to take my daughter on extravagant and expensive vacations or buy her the brand name clothes. She wants me more than she wants those things. And for that, I am most thankful her dad buys her those things. My life could've been a lot different. Even with the gloom and roller coasters, I think I prefer things how they are. I think I just talked myself out of the gloom!
Do you considered yourself to be a well-informed lung cancer patient?