I live on the edge. As I have a terminal illness, it is to be expected. Had I an intact family unit into which to retreat, that edge might blur. Living alone, it remains in sharp focus. Fortunately, my disease is currently stable. However, my finances are not.
Because of the cognitive side effects I experienced initially with lorlatinib, I found it difficult to organize my life in any material sense. I couldn’t seem to think in a linear way anymore, it was hard to reason, and my loss of memory was so profound that it felt as if it had been wiped.
It was a lot to handle on my own and worse still as I was also going through an incredibly acrimonious divorce. Before I began receiving alimony, my children started a go-fund so that I could pay my bills. The attorney fees soon became outrageous, and when I received a statement for $10,000, I lay down on the couch and wept. I had no idea what to do, and wondered if killing myself might not be the best solution (another potential side effect of lorlatinib is emotional lability and reduced inhibition).
However, I have the most amazing friends and two of them stepped in and simply paid my attorney fees. And when the dust settled they refused to let me pay them back.
Once I began receiving alimony plus child support, I was able to make ends meet. Child support ended after our son graduated from boarding school, and for the last two years I have been operating at a net loss every single month.
Now that I have a much better handle on the cognitive side effects, (aside from memory loss–which remains a great challenge) I am better able to organize. And to think about the future–in itself, a luxury; the very notion of future.
In the bigger picture, my alimony will run out at the end of next year, as I was granted only five years (from my perspective, don’t ever get divorced in NH). I do not qualify for disability because of the number of years that had elapsed between my last paycheck and my terminal diagnosis. I was awarded half of our retirement fund in the proceedings and once I am able to take social security, I will receive it at 1/2 the amount my ex-husband will get.
I am not without resources but there is at least a five year gap if I don’t want to burn through a somewhat modest retirement savings (of course, all of this is presuming I am going to live, something that is now conceivable). And that is why I am hard at work on writing a book—and also envisioning it as a best-seller (not going down without a fight).
In the meantime, my health insurance through Cobra runs out next month. I have been working with the financial department at my hospital to figure out what plan from the Affordable Care Act will work for me. It’s tricky, because clinical trials are procedure rich, ie; more copays. And, because I must seek coverage with a new provider before the end of the year (I should have anticipated this) I must now meet a new deductible.
It is all very worrisome stuff. Cue the cognitive side effects. With Cobra you must pay your premium within a specific grace period or you lose your coverage; period. A year and a half ago I missed a payment and had to appeal—I was given a second chance but also told it would be the only one. Four days ago I realized that I had again, despite my careful bookkeeping, missed another premium. All I can think is that I forgot to push submit.
When I called WageWorks, the man on the other end of the line was elderly and obviously very kind. I was unable to stop myself from weeping as I told him this was my worst nightmare–that I should lose my health insurance. And that if it happened, I would be financially devastated (my scans last month would not be retroactively covered). He was so very sympathetic but unable to help so I have once again submitted an appeal that goes something like this: please please please don’t take away my coverage because I missed the grace period by three days.
I will know what they decide shortly. The stress/anxiety is just about undoing me. And I share this with you so that you understand that I am a spin artist—you ask me how I’m doing and the pat answer is great. I am great, life is good, but there is a hell of a lot more on my plate than I sometimes acknowledge and not all of it easy to swallow.