There are many things that I wish I’d known before my brother, Jon, and my husband, Andy, were diagnosed with GBM brain cancer. First, because I think of this all the time, I really wish I’d learned to skip rocks from my brother. He tried to teach me so many times, and it was the last outdoor activity I did with him before he died. When he showed me, I could do it. On my own, not so much. My last truly happy memory of my brother was when we were on the Sacramento River with his kids and mine. We had a really good time even though he was having difficulty walking. We shared memories of our childhood and all the fun times we’d had on that river. I wish I could skip rocks.
The second thing I wish I knew before my husband was diagnosed was not to form opinions so quickly. I remember thinking when my brother was so sick that there were so many people around (hello – I was one of them!) and that I didn’t know them so therefore, who were they? Well, now that my husband is bedridden, we cherish the close friends, from all aspects of our lives, who stop by. It may be his work friends; it may be our daughters’ friends who grew up with us; it may be a school friend of mine, but all of them are equally important and none of them are “family.”
I wish I’d known to cherish, truly cherish, the little things. There was the coffee my husband made and delivered to me every day while I was still in bed. There were the hikes he took us on and the “secret adventures” he planned. There were camping trips and picnics. There were the gifts of a mountain bike, fly rod and kayak . All of which I adore and none of which I realized how very much I actually wanted. Now that he isn’t able to participate in these activities it breaks my heart that I didn’t stop and soak in every moment.
I wish I’d known that it is okay to accept help from friends. It’s taken me a long, long time to get this lesson. People want to help. I would want to help. Ask for help. It’s okay, and people are more than willing to give their time and talents to help a family in need. Some of the most incredible gifts have been things I would have never thought of. There was the shoveled driveway, the Christmas lights that came down, the money given for prom dresses just because the giver thought our girls deserved extra special dresses, the counseling sessions that were miraculously paid for, the case of wine that showed up, the cards, the phone calls from people from our past, friends that showed up on our front door, the school counselors helping the girls, all gifts from the heart. It’s been incredible and so very hard to accept with grace.
I’d wish I had known what a difficult job it is to research treatments and clinical trials and alternative nutritional information. I would have been reading these books a long time ago and changing my family’s diet (even though we eat quite well!) years ago. It’s important to stay on top of new treatments so that you are able to question your doctors and understand your options. I assumed that this was something I didn’t have to worry about because the doctors would do it (and in our case, they did) but that’s not always true.
I’ve always had a lot of respect for medical professionals, but now, they are my heroes. Really. From the first doctors and nurses we had here in Boise to those at MD Anderson and UC San Francisco, we have hit the jackpot. These people are amazingly kind, compassionate, and skilled. Oh, and underpaid. Coming from an elementary school teacher, that’s saying something! However, what I wish I had known and what I now tell others, is that when all else fails, go with your gut and ask lots of questions. It helps to bring someone along to take notes. We always, from the very first appointment, had someone to take notes. They know who they are and they are invaluable.
Another thing I wish I had known is how very much I despise the statement, “God only gives you what you can handle.” Really? Because I’m kind of at my limit and so are my parents, Andy’s mom, his brother, and our kids. Don’t say that. Ever. I know people mean well but that just might cause me to reach out and scratch some eyes out. I. Can’t. Handle. Any. More. The end.
I wish I had known that my brother and my husband were/are absolutely amazing human beings who never for one second deserved this and who both fought this so bravely. Of course, I always loved both of them, but I really wish I had realized what absolutely amazing people they were/are. Both of them put their family first and during the brain cancer years, always, always supported other people with the disease – even when they were barely hanging on themselves. Both of them cared more about others, and both of them said they wouldn’t have changed a thing. Crazy. I would have changed a lot of things if I could. I guess that’s why it’s not my time yet. I haven’t learned true compassion, and I haven’t learned to skip rocks.