Last week, I went to Barnes and Noble in search of a new book (yes I know, everyone has a nook or kindle- I do, too, I just really love paper books). As I strolled around the store, I came across the parenting section. I glossed over the hundreds of books; what to expect when you're pregnant ones, how to parent toddlers, strong willed kids, kids with autism, how to make the happiest, most well adjusted human in creation, etc. What I didn't see? A single book that pertained to my life. How to be pregnant with two kids and a spouse while they're having cancer treatment. How to parent your very young kids with a sick parent. How to raise your kids and be a good wife to a husband that needs you whilst keeping them off the stripper pole and off the nose candy...nope--nada! It dawned on me, of course, because we had to have "the conversation" with Cam.
About a month ago, we sat down with our 5 year old and told her that Daddy had something called cancer. It was a conversation I've been dreading for 3 years. When Ken was diagnosed, I knew it was a talk we'd have to have in some mythical world of "someday," I just always hoped someday would be a lot farther off. Yet, that day has come and passed. It was the hardest conversation I've ever had to have with her. In fact, even as I've been trying to write about it for a month now, the words just won't come well. How could they? Who wants to think about telling their 5 year old about cancer???
But at almost 6 years old, and having skirted around it for 3 years, she's far too observant to let this one slide. We checked in with a social worker at MSKCC, and had a very lengthy conversation on how to do it "right." I drew a diagram of good cells and bad cells (for the record, good cells are circles and bad cells are triangles). I explained how that trip to NYC when she was little wasn't just for fun, but for brain surgery (the kid has a memory of an elephant! She remembers vacations we took when she was 18 months old, so yes-she remembers that "trip" when she was almost 3). We explained how doctors have been trying to help Daddy for a long time now, how he gets pictures taken at a lot at the doctor appointments so they can watch it, and how last year the triangle started getting bigger again. We had to reiterate things that would be common sense to an adult: it's not something you can catch on the playground, Daddy can't pass it to you, you didn't do anything to make this happen to Daddy, and as a family, we'll get through it together.
We used an online story book called Kemo Shark, about how the chemo will make Daddy feel sick a while (Kemo is a shark that goes in and eats all the bad cells, but his vision isn't perfect, so sometimes he eats the cells that makes Daddy have energy or feel hungry), but in the end will make him feel all better. About half way through, my poor little carefree nugget started sobbing and ran to her room. Its one of those awful moments I'll never forget.
After a few tears on all of our parts, we resumed and finished the conversation. Turns out she was really upset because she thought Daddy would be too tired to read her stories or cuddle with her (two of her favorite things), when really those are the two things he'd probably still be able to do throughout. She's worried what her friends will say when he loses his hair. She's afraid he won't eat enough. And on the slightly comical side, she's confused about there being a tiny shark in Daddy's head, and genuinely thinks there is a triangle hanging out in his frontal left lobe. I guess I'll have to warn her Kindergarten teachers about any aversions to triangles and sharks.
Like I said, there's no guide book to this. We're flying blind and using the limited resources available to us. In the mean time, we're doing our best to let our kids be kids; they go to camp, they have playdates with friend, and we're trying to keep them doing fun summer things while Ken still feels well enough (beach, fairs, and playing outside). It might not be the same kind of childhood their friends are having, but it's the best we can do.
As far as Ken is doing, we are one week down! 8 nights of chemo down the hatch, and 5 radiation treatments complete. It was a rough (ish) week. While the logistics weren't a big problem, just the endless anticipation of the unknown was exhausting. While we still don't know a lot (side effects are cumulative, so they may be an issue, or they may be mild, we dunno!), just knowing the general gist of how things will work in terms of schedule is a pretty big weight off of him (and I). It confirmed what we assumed (we'll be pretty busy until September), but also made us feel pretty settled as we got used to the ride to and from Basking Ridge every day (where Ken has radiation at the Sloan Kettering branch there).
This weekend was a very "blah" weekend; filled with trying to get our home back in order after 6 weeks of chaos leading up to the start of treatment, and me trying to get things in order for when the baby comes. I'm almost 34 weeks along, and knowing there's a chance he might be here in 3-4 weeks (when Ken is still in the thick of treatment) has me antsy to get everything done ASAP. I'm getting big, and uncomfortable, and slow, which is not helping me get things done as quickly as I'd like. We also spent a lot of time yesterday doing "nothing" (watching a movie with the kids, coloring with the kids, etc), since a lot of our week is filled with running around, the standing still part felt kind of nice; for a few hours anyway, until our kids started talking a gibberish language and bouncing around the living room with boredom. Today we begin again with the busy-ness. Ken has radiation every day during the week, so with shuttling the kids to their respective camps, or to Grandma's house, getting Ken to radiation and back 2-3 days (his Mom and sister get the other days), my highly air conditioned SUV is where you'll find me! (side note: I forgot how friggin' hot it is in summer when you're this pregnant!!!). Once again, we cannot thank everyone enough for their well wishes, positive vibes, prayers, support, and everything in between! XOXO!
PS- if anyone sees any books on how to keep your kids off the pole, send it my way! ;)