I have a bit of a love hate relationship with the mail now. Take today, for instance. I got a birthday card with a lovely message from a friend. Loved that. I also got an unexpected medical bill for Kendall for nearly $5,000 (yes, that is my portion). I have no idea how long those will keep trickling in (years?), so it doesn’t feel like I can ever fully let down my guard. What else is coming that I don’t know about yet? I hate that feeling of dread I get in the pit of my stomach when I see those envelopes in the mailbox.
I am immensely grateful for the measures that were taken to try and save, or at least prolong, Kendall’s life. But I have to tell you, those medical bills have been insane. Before we were about to lose all of our benefits three weeks before Kendall died, I met with the financial assistance department at Huntsman because they had a program that would help pay for the COBRA premium for patients receiving active care. They would not allow a bone marrow transplant patient to be treated without insurance, and everything surrounding the transplant took months to get pre-authorized so we couldn’t change insurance mid-way for him. I can still remember sitting across from the financial advisor (who had worked at Huntsman Cancer Institute for 14 years), and seeing her lean forward, squint at the screen, look back at me several times, then rapidly type for a bit before exclaiming, “I have NEVER seen bills this high!” Keep in mind that at that time we still had nearly a full month in the ICU that would follow.
Kendall had ONE medication that was $125,000 he had been taking for several months (we had been told he would likely have to take it for the rest of his life). He was on a continual drip in the ICU that was $20,000 A BAG. One bag of a chemo infusion could easily be $60,000 or more. I still haven’t seen the bills from his continual dialysis machine, I only know that the nurses and the doctors kept talking about how “crazy expensive” the bags for that were (the ones that kept clotting and needing to be replaced, even sooner than the standard every 72 hours). The bills from his back surgery, even before we knew about the leukemia, totaled just over two million dollars (although that may have included diagnosing the tumor, I would have to double check…). A cool million for the 20 minutes he got those stem cells for his transplant (which did not include any of the preconditioning, harvesting, or treatment afterward). And on and on and on… Now those numbers were not the final amounts I have been responsible for, but still – insane.
It’s been hard to shake that feeling that “something bad” may be coming at any moment. Last weekend away at my retreat with friends, when I heard the person I was sharing a room with get up in the middle of the night I bolted up in bed, and before I was fully awake was asking things like, “Are you OK?!?!? Do you need anything?!? What can I do?!?!?” She thought it was pretty funny, but for me it was a trauma response that I simply can’t seem to turn off, that feeling of panic in the middle of the night that something is wrong and I need to leap into action (may I never get another middle of the night emergency phone call from a hospital, please…). It doesn’t happen nearly as often as it used to, but I still sometimes startle awake and throw out my arm to “check on” Kenny on his side of the bed (yes, it is still “his side” in my mind). I actually sleep with a body pillow there now to help with that.
There have also been so many physical threats to the health and well-being of my family members during this past year, as well as feeling like our very home and having a safe place to live has continued to be threatened. So is it any wonder it’s hard to convince my brain that I can finally let down my guard? That I don’t need to be constantly “on alert,” so hyper-vigilant all the time?
Sure, I am doing a lot of hard work in therapy learning how to deal with these trauma responses and not staying “stuck.” I think what helps me even more in combating anxieties, though, is the reminder of the promise Kendall (and so, indirectly, me) was given in EVERY single priesthood blessing that, “Your family will be taken care of.” And WE HAVE BEEN. I don’t know exactly how, but I have been able to pay all of those bills, without declaring medical bankruptcy. EVERY. SINGLE. ONE. And not just Kendall’s. Because of changing insurances, it’s looking like I will end up paying the max out of pocket amount for my oldest child FOUR times in two years. And there have been things like a new main sewer line, stairs and the new door to my clinic, other house repairs with all of our flooding…. It’s frankly a miracle that everything thus far has been paid, that my only current debt is my mortgage. Astounding, really.
So I continue on, one bill, one challenge, one day at a time. What comes will come. I intentionally decide each day to trust that things will continue to work out, even though it is never how I would choose for it to be (and even though it is still difficult). There’s actually a kind of beauty, and certainly comfort, in that, the reminders that I am not the one in charge. These opportunities to choose faith over fear, to trust, to literally hand over these worries and burdens to Someone infinitely more capable than I could ever be. And He never fails me.
