My wife used to fart when she was nervous, she had all of these idiosyncrocies. She used to fart in her sleep. Sometimes she woke the dog up. One night it was so loud that it woke the dog up. She’d turn around and look at me and say “Is that you!” and I’d say “Yeah.” I didn’t have the heart to tell her.
“She woke herself up?”
Yeah. but Will, I mean it, it’s been two years and this is the sort of stuff I remember. Wonderful stuff like that, that happened. Those are the sort of things I missed the most. Those little idiosyncrocies that only I know about. That’s what made her my wife. Oh, and she had the goods on me too, she knew all of my little peccodillos. People call these things imperfections, but they’re not. Oh, that’s the good stuff. And then we get to choose who we let into our weird little worlds.– Robin Williams (improvised lines) from the film Good Will Hunting, written by Matt Damon and Ben Affleck
On Tuesday, the news came. My falling tumor markers at the four week mark of my current treatment had somehow reversed direction and doubled again by the 8 week mark. And yes, of course there will be a CT-Scan next week that will provide more clarification, but the overall story seems to want to pressingly say, This is no longer working. The physical and mental breaks are officially over. Time to go back to the hard work of begging for the next thing that can buy me a couple of months. To argue why I am worthy for the trial. That I am worthy of compassionate use. I am forever grateful to have been able to re-attempt FOLFOX. It gave me a summer at home with my family. It even gave me the joys of a full-on vacation that I just took with my husband.
The breakdown came last night. At first the news came like a sprinkling of coal dust, that settled in just over my heart while sitting in my chemo chair in a Benedryl haze. By last night, it started to leak sludge resembling Elmer’s glue. Screw that. By last night it needed to pour. So I poured it out into the arms of my perfect husband.
It’s kind of like when someone rips the surface if a scar that’s never wholly healed. I poured out my grief over the refreshed realization that I will soon have to say goodbye to everything and everyone that I love. To the sweet, sweet smell of my husband and children. To seeing my kids grow up. I poured out the mourning over the unfairness of how I’ve raised my children to this point, but I am robbed from being able to see the rest of their stories. Of watching the conclusion to what amazing people they will grow into. It isn’t fair. It will never be fair. I remind myself that there are people who have had it more tragic. That if I have to say goodbye and fade into some abyss that at least I won’t be alone…
Today, I can feel some energy returning. Although it’s hard to tell, since I still have my chemo pump on. I can get my physical and spiritual energy back. I can process my scans, and what they mean. And I can start scheduling visits with other centers to review the data, I can research trials and other possibilities, and I can find the next thing. Or not. I could move on to Stivarga and go (gently?) into that good night fairly soon after, I would imagine. Of course, that could happen with any next treatment. That’s always the gamble.
When it’s all gone, something carries on..Frightened Rabbit, “Head Rolls Off”
What carries on for me, now and later, are my family. I will fight tooth and nail to keep all of the people in my tribe; the people who are perfect for me; as close to me as possible, for whatever time I have left.
I was only about 4 years or so old when I clutched onto the leg of a man that my Mom was dating as he tried to escape her room one evening. Apparently, I looked up at him and emphatically said, with my speech impediment and missing teeth, “‘T’evie! Don’t Go!” I didn’t understand then why I wanted him to stay. I just knew that he seemed to like me, that he was really funny, that he had discovered that my feet were ticklish and that he let me rest my head on his tummy when watching a family movie. Also, Mom was happier when he was around. This man was over 30 and a bachelor up to that point who had no concept of what it was like to raise kids. But he liked my Mom, and was ready to settle down and take my brother and I along for the package. In no way, shape or form was this man perfect, but he was exactly what I needed- what our family needed, not just at the time, but through tougher times that would follow. No, he’s NOT the perfect Dad. But he’s the one who came along and chose to love me, when my bio-Dad had jumped ship. And his parents did the same to become my grandparents. I sensed it from the very beginning, that he’s always been the most perfect Dad for me.
My husband appeared in my Senior English class, after I had already given up on high school dating and thought (at least at first) that I would stick with a long-term relationship with my college freshman away in Oregon. The whole story is told at length in this blog, but he sat next to me and we talked. Every day. We had the same cynicism, the same sarcastic humor… it was just the beginning of the discovery that we were soulmates. Both of us, filled with our sets of differing flaws that the other would learn to love and embrace. Both of us imperfect, but perfect for each other.
I was in my late twenties before we had our first child. I was afraid that I would mess it up. I could have been talked out of having kids, or talked into stopping at just one. I could have gone either way. But my husband wanted kids, so we had kids. It was the best thing that I’ve ever done, and the thing that has taught me more than anything else I’ve ever done in life. Just feeling all of the overwhelming, natural love for them was lesson #1. So this is how it feels. But wait… if this is how it does feel, then why was it always so hard to get this feeling from my own mother? Why didn’t it ever feel like she loved me this way.? For the first time ever, I began to figure out that things I had assumed in my childhood as normal, were in fact anything but.
If I am being honest, I always felt the most out of place when my children were babies. Breastfeeding, working, pumping in restroom stalls, picking up and dropping them off at the child care center. They had all of my love, yet at the same time I often felt staggered at the humungous degree of… logistics (?) required just to get 3 kids 5 and under happily and successfully transitioned to the next activity.
It wasn’t until they began to grow older that I started to come into my unique “Mom” identity. The kids started to become their own little people, and I thoroughly enjoyed watching those little people emerge to be the people they would be. It wasn’t my job to change them. It was just my job to coach and steer them into being the best versions of themselves they could be. My third child, my little boy, would prove to be the biggest challenge of them all.
Jack had ADHD, but of course we didn’t know that at first or what that meant. All we knew was that he was acting out. First in preK, then in Kindergarten, and then going into first grade. As bewildered parents, we… punished, thinking that that would solve the problem. We took away privileges. Nothing seemed to work. All I saw was my sweet little boy getting more and more despondent. One morning, I sent him to his room and he looked back at me and said, “I might as well spend my whole day in there, because nothing I do is right.” It broke me. I knew that this boy had a big heart, but felt like it was drifting away. It occurred to me that virtually all my son heard from sunrise to sunset was a barrage of “no!” and “stop!” It occurred to me that maybe he didn’t know how. I imagined what it must feel like to not be able to do better, but getting yelled at for it anyway. It made me feel sad and despondent. I could only imagine what that might be like for a 6-year-old unable to process what “right” even looked like.
A full psychological examination requested through the school district had our answer. Our son was well in the range of having ADHD, and cognitively gifted to boot. When the school went after him in first grade, I was now armed with the tools to get him what he needed. And when a series of events in the classroom led to him having a complete meltdown (for which they suspended him), my gnashing, fanged Momma Bear woke up from a place that I didn’t even know existed.
It was about then that I discovered that I was far from a perfect Mom. I also discovered that I was going to make myself the perfect Mom for my kids. I would be the Mom my kids needed to get them through the bullshit and prejudices that they were bound to encounter through the simple, rebellious act of being themselves in an upper/middle class suburban neighborhood. I now have a thriving fifth grade boy (still not without his challenges), and two very outspoken daughters (in 7th and 9th grade, respectively), who are not afraid to speak out about racism and sexism where they see it. And in the case of my 9th grader? Two parents who gave her complete support when she finally, officially came out. We weren’t particularly surprised and I will continue to be there for her, for as long as I am able to stay to support ALL of the amazing aspects of her life, and her siblings’ lives (sexuality is just one small part of it).
I can keep going. I have a very small, but close group of friends who are there out of sheer tenacity. For breaking through my walls of introversion and then sticking around long enough to get to know the REAL me. And still not rejecting it! Those are the perfect friends for me. I have an extended family through my marriage that just kind of took me in and included me as one of their kids or siblings. Those are the perfect in-laws for me.
All of these people will be here with me at the end. And I know that I am infinitely lucky for all of that. My losses will be mourned, because my losses will NEVER BE FAIR. But my blessings will be counted. All of these people that I’ve let into my weird little world, and who have let me into theirs. They represent all of the good stuff. And all of the love I learned to lean into even though the very thought of losing that same love is unbearable. It’s so powerful that it can’t be lost. So I will leave myself here in their hearts, so that they always feel a part of it, and know that it will never leave them.