It’s not just a river in Egypt.
It’s also a lovely balm for those of us facing realities that are harder than we would like. Since my surgery 10 days ago, I’ve been focusing only on getting better and healing, without really thinking about WHY I had to have the surgery in the first place, and what it means to have had a metastasis taken from my lung. But time is a-wasting and I need to wake up from this haze of anesthesia and painkillers so I can formulate my plan for the next step.
Technically, I am now Stage IV NED (no evidence of disease). This in itself is a very good thing, because it means I have no active disease in my body (at any detectable rate, anyway). Now we need to figure out how I can stay NED for as long as possible. I would happily take 10-20 years, please!
I have Kaiser, which is great as far as it goes, but is pretty terrible for melanoma care, which is bleeding edge cancer stuff. The research changes extremely quickly and there a lot of new drugs coming out, but nothing has been around long enough for a “standard of care” to have developed, which is what Kaiser relies on.
So we are going to go outside the box and self-pay for a second opinion. I’m investigating MD Anderson vs Memorial Sloan Kettering right now, and I feel grateful to know that either way, I will be in the best hands. I don’t know what they will say, but hopefully we can figure out a way to follow through with their recommendations.
I’m so deeply, incredibly grateful for the outpouring of love and support from our community of friends and family (emotional, financial, acts-of-service, prayers, thoughts, etc.). It’s only because of this that we are even able to talk about second opinions and seek outside treatment.
I swing wildly between being so optimistic and encouraged by reading reports from multiple Stage IV NED survivors who have been NED for years, and then getting scared and depressed by the statistics (I am NOT a statistic!!!). Maybe I’ll feel better once we have a plan, but I need to get my head out of denial-land so we can start formulating that plan.