“Though I don't believe in magic, I believe in me and you...”
Hi friends! It's been a good long while...with the whirlwind of pregnancy, treatment, new baby, and more treatment, I haven't had hands free to write with.
This summer was a blur of difficulty...of running my kids to two different camps, running Kenny to radiation and back, doctor appointments for him, OB appointments for me, his parents filling in where I couldn't, in all of the above - and those were just the logistics. He lost his hair. He lost his energy. He lost himself. The swelling on his brain caused him to zone out, to forget what he was saying mid-sentence, to forget what I said to him two minutes ago. The steroids he took to combat that swelling had him endlessly hungry, never satisfied, and always angry. It was hard, and it was scary. We tried our best to make the best of what little of a summer we had. Our kids loved their camps, the extra time with grandparents, and the few outings we managed between his treatment and my pregnancy. Waddling into Sloan Kettering, bigger and bigger every week, felt surreal at best.
He completed his last treatment on August 18, and we thought for sure the hardest of those times were done with. On August 21, just 2.5 days after treatment ended, we had a pure ray of sunshine. Our little boy decided to arrive two weeks shy of his due date...I was lucky to have a very uneventful labor and delivery, and after about 2 minutes of pushing, Nathan Thomas Courtney entered the world with a roar of a cry. I remember looking at his face and thinking that nothing could take that moment away from me. Nothing. His beautiful scream was music to my ears. There were times I felt so drained of mental energy, that I was terrified my body was going to give up on him, that I wasn't going to have it in me to get him here safely. And he surprised us all with his red hair and blue eyes...I joke often that if I hadn't seen him come out of me myself, I wouldn't believe he were mine, since his siblings are both so dark.
Two weeks later, Ken's doctor informed us that they were doubling the dose of chemo for the next 6 rounds; something we didn't know beforehand. We thought maybe it wouldn't be so bad, since he was ok on the chemo in the summer (it was the radiation causing the neurological issues); but his first round knocked him on his behind, and the rest of us in our teeth. You know it's a rough week when you look back at the rough summer you just had, and think it was cherry compared to this. He barely got out of bed for a week, barely ate, barely said a word. He felt nothing but ill, and cared about nothing. Adding insult to injury, he was supposed to return to work that week (and was soooo excited to go!), and couldn't because he was just too out of it. I can't imagine how he was feeling, but I can tell you from my end, it was brutal to watch. Seeing him so knocked out...so lacking in life, it was crushing to his family and I. It was starting to feel like every time we'd get our heads up, we'd get drop kicked again.
So, needless to say it's been a rough few months around here. The up and down, in and out of it all could drive the most sane person a bit batty, which, we all know, I was never all that sane to begin with. Marriage with 3 kids is hard in the best of situations...three little people who rely on you to be the best parents you can be, to help them become the best adults they can be. The constant chaos of three little people, with three differing personalities and three different sets of needs can drain the most well slept and caffeinated of parents. Of course, our situation is a little different. It's a constant battle in our house to try and maintain some semblance of normalcy. And as far as us? That's a harder bit to explain.
Being Ken's wife is a privilege to me. He's smart, and caring, and the one person I always want to talk to. He loves our kids, he loves me, he loves his family and his job. He's been my best friend since I was 17. In fact, this summer we passed the point at which we've been together exactly half of our lives. The last few years have been hard. Being his wife means all of those wonderful things; but it also means that I have to see the look on his face every time the doctor gives him bad news. Every time, and I mean every time that happens, I lose him for a while; I lose him when he hears the news, I lose him when the treatments are just beginning, I lose him when he feels better and then worse again. It's a tough situation, but he's so worth it. Every time I feel my head going under, I think of the two crazy kids who got married on the beach almost 9 years ago. We were very young, but we weren't dumb- just lucky. We found each other young, we spent 8 years working out the kinks before marriage. We never had any unrealistic view that the other were perfect, but we loved each other very much. From there we grew our homes, we grew our family, we had plenty of experiences good and bad, great and terrible. Every time he's "gone," I use all of those memories as my fuel, because I know he's still in there, and have faith that he'll come back eventually...and he always does. It's always just a painstaking waiting game...
So why share all that now? My friend pointed out to me that based on my Facebook/Instagram posts, we're like superstars breezing through brain cancer. We're not. We've had some dark days, but what I choose to share, and what I choose to focus on are the bright parts I manage to conjure up. I wonder if people would really rather me post things like "Hubby felt faint and needed to sleep 22 hours..." or "Feeling sad and lonely because my best friend is in a chemo haze..." I choose not to, because that's not who I am. Instead, on those days, I watch my kids extra close...I memorize their faces. I stare at their smiles. I take a thousand pictures and share 200 of them online. I change the laundry, I feed them meals, I bring him gatorade and crackers, and I just keep moving. Not because I'm not sad, or scared, or tired, or overwhelmed; but because both he and our kids deserve better than my melting down every 5 minutes. It's devastating to see your 34 year old husband knocked out from chemo; unable to enjoy the energetic kids and unable to stand the thought of food, unable to get up. And it's not easy breezy for me to do it...there are days I succumb to the sad. There are days I'm overwhelmed, and sending his mom mile long texts that I just don't know what more I can do. There are days my kids are in rare form and I just don't have the energy to fight with them. Last week was particularly overwhelming, but as only the truest of friends can, one of my best reminded me that I don't get a choice...I have to pick up and keep moving. Not forever, just for now. It was exactly what I needed to hear. So I did.
There are times, when I'm writing about all of this, that I feel badly that I can't say more about how he's feeling; but since I'm the writer, it tends to come from my angle. It occurred to me recently that people may wonder about the fact that I share and Ken doesn't. The simple truth is that I am a sharer and writer by nature, and he isn't. Its one of the reasons we complement one another so well. I'm chatty (he's less so), I'm English, he's Math, that whole opposites attract thing. He's always aware of what I'm sharing (he reads and approves of all posts pertaining to him/his treatment prior to my putting them out there- even FB posts). I just wanted to clarify that to anyone thinking I'm being insensitive to him. I write to spread awareness, to connect with others like us, to share our story because thats who I am. I am a writer, a sharer, and doing so eases me.
I'm scared to even say as such, but the last 5 days have been so much better than the 5 months prior. He finally got to go back to work in between rounds of chemo, which seems to have brought him back some. This weekend I saw him playing outside with our kids, which I haven't seen since July, and he actually started chit chatting again with me, eating some real food, and I saw "him." I'm sure that's hard for others to imagine who haven't seen it, but friends we spent some time with the last couple of days have mentioned he seems more himself than he has in a long while. I'm cautiously optimistic about the coming rounds, since we at least know what to expect going forward. Hopefully, we can time it a little better to keep him working well. To anyone who has reached out and I didn't get a chance to respond to, I am super sorry!! The adorable little poop machine we call Nathan is a stage 5 clinger (i.e. he loooooves to be held, and since he is my last baby-- sooooob!--I totally love it!); so I'm often one handed. As always, we so so so appreciate the many thoughts, prayers and positive vibes sent our way! XoXo!