My mom has been gone for 20 years. Most people don’t realize that, before she died, she had a terrible, debilitating illness. When she was diagnosed, I no longer lived in the same city with her and struggled with how to be available to her and to my sister, who lived close and ended up responsible for her care. She was sick for maybe 7 or 8 years and after she died, I realized (slowly and with some guilt) that the person I missed, the person I called “Mom,” had been gone since shortly after the illness arrived. It was an Ivan Ilyich moment long before I read the story.

The problem is that the healthy have so little connection to illness. If you don’t wake up in pain, for example, you can’t possibly understand how completely pain can take over your whole being/your every thought. If you don’t travel to radiation every single day, is it possible to understand the debilitating sorrow and fear — not to mention humiliation and pain — that come with that trip?

So, how do the healthy in a family maintain their relationship to the ill? That’s a question that troubles me constantly. Ken falls asleep before dinner is on the table and he sleeps until long after we have all tucked ourselves in for the night. When he pulls himself — still  worn out — from the bed every morning, the kids are either sleeping or rushing to their activities. It’s not exactly bonding time. Yes, the weekends offer a tiny respite from chaos but not from cancer. While Ken gets a break from treatment over the weekend, he continues to be exhausted and emotionally bereft.

When my mom was ill so many years ago (long before we could turn to the internet for support or even information), her moods changed abruptly. She was unpredictable, often irritable and disoriented. Occasionally, my quiet, loving mom would actually shriek at her caregiver (usually my sister, sometimes me). She would always be apologetic later but that never made it easier in the moment. Of course, Mom had an irrefutable excuse for all of her moods but when I think about her now, I focus more on the person I knew before the illness — always depressed and anxious, but creative, smart, so encouraging, and supportive of the two daughters she loved without measure.

Ken’s different too and so are we. A little story:  I met one of Ian’s camp counselors last week — he goes to a music and art day camp at a local college — and she laughingly said that she hugs Ian every day to try to make him smile. It’s a frequent refrain — people commenting on Ian’s moroseness. We don’t share our private sorrow with most people and I’m not sure it would make Ian’s life any easier. Kids, especially, seem to enjoy teasing him about his “lack of emotion.”

Are the kids even aware of how much they lean on each other now? They hang out on the patio and play a board game or build a fire in our little fire pit. Sometimes, they sit together and play silly computer games like “slither” or “octodad.” It’s shockingly normal in our very abnormal lives.

The thing about cancer is that it will steal everything from you, if it can:  your confidence, your privacy, your energy, your appetite, your short term memory!, even your relationships. And I’m not just talking about the patient. Cancer steals from the whole family. Low resilience today? Don’t worry; there are new challenges coming your way. Perhaps new tumors, ugly side effects or maybe something prosaic like a flat tire.

I haven’t changed a tire in more than twenty years but this week, the Mini got a flat. AAA sent Haley, me and the car home in (and on!) a flatbed truck. (Thank you, Rich, for arriving in 20 minutes — instead of the two hours we were told — when you heard we were stranded roadside.)

Haley and I tried to take the tire off by ourselves; we were, unfortunately, foiled by machine-tightened lug nuts. We had to call on Tristan’s strength, a harsh blow to “girl power” but one does what one must.  Ken even came out for a couple minutes to help Tristan work a particularly tight lug nut loose, though he went back into the cool quickly. At 90F, the day was far too hot for him.

I had a secondary adventure since the replacement tire was not on a wheel. The mechanic at Costco said, “Did you buy this tire here?” Well, of course not. “Does that matter?” I asked. Sigh. “I’ll put the good tire on the wheel and dispose of the flat for $20,” he said.  “Sold.”  While I was putting the new tire on the car, two women stopped to ask if everything was okay. Isn’t that lovely?!

Our new refrigerator was also delivered today. The delivery men had to take the old frig apart to get it out of the house. Luckily, the new one was in pieces (the doorways in our 120 year old house are only 29 inches wide). The swinging door between the kitchen and hallway was, however, a big problem and the delivery men wouldn’t touch it.

Fortunately, Tristan and Ian were able to help, taking the swinging door off its hinge (during which the spring mechanism exploded across the room). Thank goodness there were no important body parts in the way, because the spring is at least 5 inches long, highly compressed, and very heavy.

Replacing the spring was much harder than shooting it across the room. Tristan figured out that we could compress the coils with zip ties but it took hours to get it small enough to fit in the hinge. At one point, after multiple attempts, I experienced DOUBT and went to Lowes for a replacement.

The very nice Lowes employee assured me that there wasn’t a snowball’s chance in Hell that I would find that hinge mechanism at any store (except maybe Pittsburgh’s hidden treasure, Construction Junction, which specializes in reclaiming antique and historically relevant hardware, furnishings, etc).  So, I returned home and reapplied myself to the task.

About the time I was ready to throw it through a window (also original to the house so I could NEVER actually throw anything at the windows!), Haley sat down with me and gently slipped the spring right into the hinge mechanism. She held it up, I looked at it, put my head on the table, and burst into tears. “Mom, mom. I’m sorry. Do you want me to take it out?” “No. No, I really don’t want you to take it back out.” “Then why are you crying?” “I have no idea.”

We had some trouble with the chemo drug approval process. It was torturous. Literally (yes, in the original meaning of the word), it took more than 3 weeks to get his chemo pill approved. Toward the end of the process, the oncology nurse called, “Your drug copay is $3,000/month.” The radiation oncologist said we shouldn’t pay it, that Ken should just go on the pump.  That’s an issue, though. Ken hates that pump. I was worried too, about the whole process: home health nurses visiting twice a week, the pump sound every 1 minute and 17 seconds, no showers.

Trying to move things forward, I called the specialty pharmacy. They said they couldn’t talk to me because Ken hadn’t given permission. Here’s another learning since this Hell all started: it is possible to break through their bureaucracy. It serves them rather than the patient and it is flimsy.

I said, “I know everything about his care. You can’t possibly tell me anything that I don’t already know. So, why don’t you ask me questions and I’ll just tell you the answers.” She said something about policy and I said something respectful about being Ken’s primary support. She said, “What do you know?”  So, I told her what medicine he had to take, what his diagnosis was. I gave her his birth date, his street address and his phone number. She said, “Hold please.” When she got back on the phone, she was very nice and apologetic for putting me through “so much.”

Then she told me that the pills were $3,000/month, which, of course, I already knew. “Move ahead with it,” I told her. “We’re prepared to pay.”  I reminded her though that we needed the pills quickly as the delay was impacting Ken’s treatment.

And then we come to the clincher:  When she processed the medication for payment, I heard her say. “Huh.” I asked her what was up.  “The pills have a $0 copay. You don’t owe $3,000.”

Yes, that’s right. We almost put Ken through 6 weeks of pump HELL for an insurance mistake.  I logged in to the insurance website to check on the claim and saw that there was another one in process. It was the June chemo bill and it was $84,000. We don’t owe it. We’ve already hit the new deductible and all but $800 of the new out of pocket maximum. But when I thought about what it could mean if we DID owe it, I just sat there on the back porch on that beautiful, sunny morning and cried.

Ken’s been through nearly two weeks of radiation. He says that he can feel the beginning of the sunburn-like pain. The worst part right now is that he has to go to the hospital every day at 3PM for treatment. I hated the weekly Thursday chemo sessions but the daily radiation trip is far worse.

Going to a hospital every day for treatment is an exhausting ritual. We drive into the parking garage and I say “Hey there, how are you today?” to the man who gives us the ticket (yes, there is a guy standing at the gate who gives us a ticket and I have no idea why a guy has to do that but he’s really friendly). Then we ride the garage elevator down to floor 1 and take a meandering walk through the hospital to elevator A (down the hall with the memorabilia on your right to the coffee shop on your left, turn left at the red Security sign, and walk all the way down the corridor until you’re sure you’ve gone too far). We take elevator A down 2 flights to a sub-basement. When the elevator doors open, first we go to the desk and get our parking ticket stamped. After that, we walk to the radiation treatment area and the techs take Ken back for his radiation while I sit in the waiting room.

Funny story – last week, I was reading an e-book in that waiting room with my back to the TV (some terrible “daytime drama” was playing). Gradually, I realized that I was the topic of conversation. The women putting together a puzzle at the table near me were debating my gender. The discussion went on for a bit. “What’s she doing?” “You mean him?” “That’s a she.” “Are you SURE that’s a girl? I thought it was a guy.”

Anyway, Ken’s treatment is currently about 20 minutes long, focused only on the primary tumor but now that he’s on the chemo pill, the electron beam radiation will be added, another 20 minutes of radiation daily.

We lost someone dear last night and our hearts are broken all over again. I didn’t know that there could be grief strong enough to push cancer aside. Rest in Peace, lovely girl.