Many of you have been asking for an update on my health. Local friends and acquaintances, my many clients, they all politely ask how I’m doing. And I know that really all they want to know is that I’m doing fine. And honestly? I’m fine. I’m working. I’m going about my daily routine barely skipping a beat.
They inquire about my chemo infusions every three weeks. Am I still getting them? Yes. They act surprised, because, you know…I look fine. So they ask the follow up: But the drugs are working, right?
And the answer is an honest one: I don’t know. No one knows. Yet.
It sucks that this new drug I’m on, my Godzilla drug, is so new that any answers to my questions about the side effects I’m experiencing aren’t readily available to my medical team. While I watch, they type on their computers, searching the same Genentech website I’ve already been to, seeking resolution to the concerns I have. They read aloud as I recite in a whisper along with them. They glance over and realize quickly that I already know what the Genentech website says. Then there’s the brief pause before they proceed cautiously, repeating what I already know they don’t know.
I’ve done my best to stay very busy these past 18 months, giving myself little time to dwell on the situation. But today it’s become very clear that this situation is wearing me down.
I’m looking for real-time information. I’m looking for firsthand reports from someone, anyone, who’s been given this drug.
That Adele song replays over and over and OVER again, in my head. (Yes, that’s a link. Take a listen. Addictive, right?)
Hallo? It’s me. Hallo from the other side. Hallo from the outside. Hallo? How are you? It’s so typical of me to talk about myself, I’m sorryyyyyy.
I turned to my online support group for feedback. This is a non-public group, and is specific for those with the same diagnosis that I have. Currently there are 1,775 members worldwide. I received 3 replies. One person in Australia had to get off the drug due to debilitating side effects after only 6 rounds of it, but now remains in remission (after three months). Encouraging, sort of.
The other two have been on it for less time than I have, and they don’t know yet if it’s working for them either. They are both much more advanced in their cancer progression than I am, though we are all stage 4.
I remind myself that in all honesty, I only care what this drug will do for ME. And I want to know NOW.
Godzilla and I have been a team since September. Because Godzilla is cardio-toxic, as were the prior drugs I was on, I continue to have echo-cardiograms to monitor Godzilla’s effect on the ability of my heart’s left ventricle muscle to pump. And, now I’m also being monitored for my liver function, because liver failure is another potential side effect of Godzilla. So, you see, it’s all just trade-offs. Have I noticed any symptoms? No. Does that mean so far, so good? No again. It only means I’m incredibly thankful to be asymptomatic at this point in time. And I hope to by asymptomatic for years to come. Because I want to beat the odds.
And, after five full months I want to know if GODZILLA has done what it was designed to do. Has it gifted me a revisit to remission? Or at least slowed the charge?
Or has it allowed cancer to persevere and spread even further?
I was due for follow-up scans in December, to get those answers. But scans were delayed until January due to the travel schedule of my oncologist. She wanted to be available to redirect my treatment plan if necessary. So I’ve been patiently waiting. The holiday season came and went, and January is about over.
And finally, FINALLY, scans were scheduled for Monday of this next week. And I’ve been counting the days. PET/CT on Monday, echo-cardiogram on Tuesday.
But this afternoon my oncologist’s office called. It seems my insurance, my OBAMACARE insurance, has denied permission for the PET scan. They have DENIED permission for my PET scan. They have raised my premiums, my deductibles and my co-pays (now at $90 per visit, the highest co-pay my doctor’s office has seen thus far). And now Obamacare, a.k.a. the Affordable Care Act, has DENIED permission for my PET scan. When Obamacare was enacted, they cancelled the plan I liked, the plan I was told I could keep. After they cancelled my plan, I was forced into a plan that includes maternity and pediatric coverage, two things I’ve not needed since…well, LONG before Obamacare got shoved down our throats. So, to be clear: I am paying for someone elses pediatric and maternity care, yet I am DENIED a PET scan for my own Stage 4 cancer.
My reaction was immediate and emotional. And my tears have betrayed to hubby what I’m really feeling. I hate when I have an unexpected overload on my emotions. For a fleeting moment, I actually wished I were still a kid, when I could simply race to my bed and cry my eyes out. But then I remembered that those childhood moments never culminated in a calmer sense of emotional stability. In reality, those uninhibited tears of my distant youth simply brought me to a place of physical exhaustion, leaving me no less fearful then before the tears spilled down my face in the first place.
I struggled to keep composure on the phone. But I managed to beg for my oncologist to go to bat for me (AGAIN) with Obamacare.
I don’t know that she will. I don’t know that she won’t. I only know that before they even called me, my Monday appointments to get both the PET and the CT were already scratched from the schedule. The echo-cardiogram remains for next Tuesday and the CT was rescheduled for next Thursday…just one day before I sit down in front of my doctor and receive results, assuming she even has them. I actually asked, and was told they’ve put STAT orders for the CT results. They’ll be interpreted PRONTO, I’m told. Right. Don’t make me hunt you down.
And then, we’ll see how well that CT scan reflects results. My guess? It won’t. And a PET will be required for a more conclusive look…as has happened TWICE BEFORE.
And upon the big (or even inconclusive) reveal, once my emotions have calmed to a more demure level no matter the words I hear, you can bet your bottom dollar that I will be looking ahead. Looking towards the horizon, towards a better day.
Thanks for taking the time to follow along. For your support. It’s much appreciated.