I had a wake-up call this past week. Well, there were multiple calls, each steering me further from the feeling of normalcy…and ultimately, more aware than ever that I am actually sick.
I hate admitting that. Saying that or typing those words make me feel like I’m giving in. I was told to try to keep life as normal as possible, but how can I do that when I already have “critically low” white blood counts, that I can’t fight off the tiniest of infections. I can’t even eat fresh fruit! But I can eat ALL the carbs, bless.
Unlike most chemo patients, I won’t be getting Neupogen shots, which stimulate the growth of white blood cells. Neupogen mixed with Bleomycin (one of the four chemo drugs I receive as treatment) can cause further lung toxicity, and I’m already on watch for a pulmonary embolism thanks to some shortness of breath. Very giving, this cancer, ain’t it?
So I’m stuck in this quarantine-limbo when just three weeks ago every nurse and doctor complimented me on my lab work. I kid you not. “Your hemoglobin looks beautiful,” is something a real human being told me before the new year. I was thrilled! What does that really mean? Who cares! I’m killing the bloodwork game! I actually believed that all my fabulous numbers were going to make this a breeze. A quick bout with cancer and then poof, back to skipping and smiling through life.
I thought I had accepted everything that comes with this disease, but I realize now how naive that notion was.
I realize now that I am sick. I’ve been so distracted with the pressure of staying positive that I didn’t allow myself to process how big this is. This isn’t the flu, this isn’t a stomach bug, and I’m not going to be able to be bright eyed and bushy tailed every day. A lot of this stems from the massive amount of guilt I feel as someone with a treatable form of cancer. How lucky am I?! I have something I can beat and I’m surrounded by love and support. How dare I not be happy and bright every day?!
Well, buds, I can’t. But don’t worry, I’m not feeling sorry for myself, or admitting defeat. I’m just digesting this new normal and I can’t fight this as the person I was months ago. Last week, a very wise lady friend told me that feeling anger and all the other not so sunny emotions are okay. As long as the emotions keep moving and I don’t allow myself to get stuck in sadness, depression, anxiety, or despair, I’ll be okay. I GOT THIS. I see a challenge ahead, not a surrender.
But I also see 5 years of extensive monitoring. Long-term side effects that could follow me around for years after that. Which leads me to something that happened last week, something that truly reminded me that I was no longer little old me. And I hate to get political, but this now personally affects me in a gigantic way.
Our government wants to put me in a high-risk pool. I’m driving up costs for everyone else, so that’s how we can keep premiums down. But you know what happens when people with pre-existing conditions get put into those pools? You wait for treatment for months. That’s the difference between stage II and stage IV. That’s the difference between life and death. Repealing the ACA won’t fix rising premiums, but it certainly will make the rest of my life – and the lives of millions – a nightmare. In just one month, my insurance has been billed over $50,000 for my care. I’m almost at the yearly max imposed by insurance companies pre-ACA. IN ONE MONTH.
I’ll spare you from any further political chatter. But know that this isn’t about the left or the right. It’s about human decency. I’ve got a solution for you: let’s get the same health care members of Congress will get if they repeal the ACA. I wanted to march over the weekend for several reasons and I was devastated that I couldn’t – I actually asked my doctor if I could and she practically laughed in my face. But I watched the world stand more united than ever and it gave me so much strength.
So for now, this nasty woman is focusing on that. And not just because focusing on anything is harder than ever. I think chemo brain is here. This post was the hardest one I’ve written to date because it forced me to face some fears and because my vocabulary has never been more limited. WORDS. ARE. HARD.
WE STILL GOT THIS, THOUGH!