The year is coming to a close. Every Christmas, I pull out one of my favorite books, A Christmas Carol. After you’ve read it as often as I have, you begin to look for the nuanced language because you know the story so well.  One of my favorite passages is, “…in short, I should have liked, I do confess, to have had the lightest licence of a child, and yet to have been man enough to know its value.” He’s referring, in that passage, to how easily a child sits in his/her mother’s lap, without really recognizing or appreciating the contact and love contained within.

My point in mentioning year end is that we’re six weeks from our culture’s annual “new beginning” with its stereotypical resolutions and lists of the “Top [some number] Best [fill in the blank]” (you know, the top 100 songs of, the top 10 toys of, the most influential people of). For me, the calendar is a reminder that by this time last year, Ken had started to notice some physical changes. He didn’t have a diagnosis yet but unbeknownst to us, he already had cancer.

Have you ever been to the Grand Canyon? Not a drive by or stand at the nice safe overlook at a visitor center…I mean, a walk along the edge and peer gingerly over the outcrop at the ground far below. (Perhaps, one of these days, I will tell the story of our visit, Haley’s heat illness (heat stroke?), Tristan’s fearless desire to conquer the canyon, Ian’s wanderlust, and my paralyzing fear of heights or, more specifically, fear of falls from heights.) Anyway, that’s where I am — on a precipice. I want to take a (GIANT) step back to safety but I can feel myself being pulled forward, downward.

The boys and I went to dinner recently with Ken. He was having a terrible day but we convinced him (perhaps wrongly?) to go to his favorite, Eat N Park, for an early dinner. (Eat N Park, for you non-western PA folks, is known for its reliable salad bar, which is Ken’s favorite dinner item.) You may recall an incident that I wrote about earlier this year, a running-to-the-bathroom-in tears incident that occurred for reasons I still can’t explain. Well, sure enough, it happened again at dinner at the SAME Eat N Park. I told my eldest afterwards that they are going to put my picture by the register like those grainy photocopies of bad checks and coupons at the grocery store — “Don’t accept this lady. She’s crazy.” All I remember is looking at my eldest as my husband hustled outside to sit in the car, in pain and too stressed to sit any longer, and suddenly my vision is blurry and tears are running down my cheeks.

We’ve run the gamut of Thanksgiving planning. At first, we tried to schedule a vacation. I know how irrational that sounds; and those of you who have said that we should have known better — well, you were right. However, Ken kept saying that he wanted to take one. The oncologist told him too. We thought we could make it happen. We planned it down to the taxi rides to ensure he would have the least amount of disruption or discomfort. But we were not successful and it was stressful for him and bad and that’s about all I want to say about that.

Then, we thought we would do Thanksgiving at our house so that he could rest and just eat a little bit and visit with his immediate family as much as he felt up to it. But that was another good idea gone horribly wrong. After a couple good and yet not good ideas, we canceled completely. He’s just not up to it. But that’s okay. The kids and I will be play some board games and when he feels like it, we’ll eat a little something together (maybe a little turkey breast and some mashed potatoes?!), with great thankfulness for the gift of our time together.

It’s hard to explain to others what it’s like to have a debilitating and life-endangering illness. Ken talks about “us healthy people” who aren’t obsessed with pain and death. I tell him that a big part of being healthy is recognizing that there’s lots of stuff that could kill, maim or permanently disable us but we choose not to focus on those things. If I thought about the diseases that could be taking root inside me, the things in my house that could kill me (fall in the tub, anyone?!), I’d be incapacitated by anxiety. I KNOW that there are limitless possibilities for pain and death, I actively choose not to worry about them. It’s impossible to push those thoughts away if you have that debilitating and life-endangering illness. And I think, more than anything else, that’s what separates us, that’s what Tolstoy was illustrating with his portrayal of Ivan Ilych.

Ken’s been having a lot of pain again. It scares me; I can only imagine how it makes him feel to have discomfort that he describes as being occasionally off the charts but mostly somewhere between a 3 and a 7. The medication helps with pain management but the fear of pain returning can’t be managed with tylenol and oxycodone.

We have another chemo session coming up on Monday. Wish him luck. More than anything else, he has come to appreciate your notes and texts.

 

There’s a leak in my resilience bucket. I keep refilling it but after 10 months of this horror, I have finally realized that there’s a hole somewhere and my resilience is slowly leaking out like air from a mattress.  It doesn’t matter how many times I refill it; the resilience level is lower every day.

Sickness makes people … irritable. No surprise, right? They don’t feel well; in fact, they don’t feel like themselves anymore. Ken has chemo brain clouding his thoughts. He says that, while he’s sleeping, he doesn’t have cancer. Just imagine that jolt when he awakens and remembers. It’s no wonder that he’s out of sorts.

My mom used to say, “Sticks and stones may break my bones but names will never hurt me.” Even better, Eleanor Roosevelt said, “Nobody can make you feel inferior without your consent.” Mostly, I just feel sad; although, to be honest, sometimes the arrow hits the target and I have to hide away from witnesses (kids) to cry a bit. Then I smack myself (metaphorically!), adjust my big girl underpants and get back to work.

The stupid crap I have to continually guard against is part of what is wearing me down. On Saturday, I opened a piece of mail from Ken’s oncologist. It was a bill for $7,800 +/-.  I’ve been expecting one, though not that large! Before calling to negotiate a payment plan, I checked the insurance company website, just in case… and sure enough it was another incorrectly processed claim.  Monday, I called the insurance company and said, “Take a look at my call history. I have another claim for you to reprocess.” But every single time I fix one, I also worry about whether I’ll accidentally pay one that I shouldn’t or that I’ll open an envelope with a large bill that we do actually owe.

We’ve been on a surgery pendulum. Let’s recap:  before the PET scan, the surgeon said “no surgery” and the radiation oncologist agreed. After the PET scan, the direction changed a bit. We went to Ken’s radiation check-up with some issues. Ken has some pretty significant pain so we needed to talk through some strategies to manage it. In addition, we had a lot of questions about the slow healing of the radiation damage.

Funny story — well, funny in a macabre way, I guess:  Ken’s describing his pain to a radiation oncology resident, who comes up with a tentative diagnosis to discuss with the doctor. The resident leaves the room and I look down at my phone. “I wonder how many other people are hoping ‘anal fissure’ is their diagnosis,” I murmur. I look at Ken and we both laugh.

Unfortunately, anal fissure was not the diagnosis. The radiation oncologist came in and talked to us about the PET scan results. The tumor is not, as he’d hoped, gone. It’s just smaller but radiation is no longer an option. He said that he’d have to double the radiation dose, causing damage that would not heal. The pain Ken’s experiencing is likely a result of damage from the lower dose radiation Ken received this summer.  To relieve the pain and address potential new growth of that primary tumor, the radiation oncologist wants Ken to have surgery as soon as possible. The oncologist disagreed, though, saying that Ken can’t be off chemo for two months.

What happens when the doctors aren’t aligned? Well, fortunately, they took us out of the middle and met at tumor board last Friday to discuss Ken’s treatment. The result is that surgery is off the schedule again. Chemo, however, is on the schedule indefinitely. Ken will have another PET scan at the end of the year or early January.

For now, I’m going to focus on planning Thanksgiving. Perhaps a little homemade pumpkin pie?