Oct. 26, 2015
The past few weeks I’ve fought depression, anxiety, jumping heart, breathlessness. Tried to whip myself into shape by keeping running–even doing a race last weekend, which physically I dreaded knowing how hard it would be. No heart attack, stroke; same depression, desire to sit and stare. While sitting and staring this afternoon, I noticed my shirt was vibrating like a bouncing ball. My heart was pounding.
I wanted to go to a fundraiser/birthday party yesterday for a little girl, Natalie, who is fighting DIPG. It’s about an hour and a half drive from here, but I really wanted to go; I had way too much to do, and couldn’t get everything ready in time. I feel like I’m moving through molasses. So I finished getting the stuff together this morning, except a store-bought birthday present that I’d really like to have… After my dentist appointment, I went to treat myself to a yogurt and found out my account’s overdrawn. The checker tried to run the card again–ouch!–that’s totaling another $78…it’s expensive to be poor. This only adds to my depression, now that I can’t get that extra present, and wondering how I’ll afford gas.
This depression has been going on for a while; I attributed it to difficulties with my father, who scheduled a time to “have lunch” with me a couple weeks ago. I was really happy thinking about going to hang out with Dad, but then my car was overheating and I ended up calling him and having “phone lunch” instead. It wasn’t about hanging out with Dad, of course, but the bi-annual inquisition around his wife’s being upset with me, and of course I am the cause of all their marital problems. For 20 years. Never ceases to amaze; I can always tell when Dad is upset because she makes life miserable for him until he goes after me to request a “meeting of coming together for healing”, which is really a front for ambush of 20 years of resentments. Yes, sometimes I can sense he’s upset from afar, and usually do. But that’s not all it is. There’s something more, somehow.
It dawned on me that maybe I couldn’t bear to see this little girl who’s birthday coincides with the day I took Jack to the hospital, October 24–then a Monday. This is D-Day week for me, Monday thru Friday. DIPG day. DIPG-Day was Friday, then October 28. We spent 10/24-11/3 in the hospital. I love Halloween; October is my favorite month! But October 12, 2008 we lost everything in a fire, and the week October 24-28/2011 I found out I was losing my son. My heart pounded all week. I’d sleep an hour or two at most, at a time. I felt like my adrenaline was pumping at 60mph in 2nd gear, for those of you who drive a standard. Wow I’m getting old…
I find my symptoms similar to what I hear from guys with PTSD. Now, I can’t in any way compare my experience to a war zone, but being told your 3 year old son has no more than months to live IF we do radiation…or we could take him home to be comfortable. All week I knew something was terribly terribly wrong. The preceding two months I knew something bad was happening; I watched him like a hawk and when he started limping and favoring an arm… I insisted on seeing the doctor at the clinic THAT day, Monday October 24. She did some reflex tests on him to write up a neuro-report to take him immediately to Children’s Hospital. Crazy grabbing things from home–jumping in the car and rushing down into downtown Los Angeles–rather “Little Armenia” area of Hollywood, the glitz a few miles away… I parked in the wrong hospital lot. It was Presbyterian Hospital which is right next to CHLA…so I ran with the stroller around the corner to CHLA. I found the Emergency floor and went in; we sat with triage nurse for a few minutes after waiting for quite some time, Jack not all too happy at the wait and without much for me to do to entertain or calm him.
The doctor’s notes were helpful to get us with the neuro team, thank goodness. More hours of waiting. They finally put a catheter in his arm so they wouldn’t have to poke him so much. I called it the “scary” arm and would pretend to freak out at it, making Jack peal with laughter. Whew!! I found something… We got paper and pens. We wrote all the numbers to 125 out in concentric circles on the paper…and started drawing shapes. Parallelograms, trapezoids, and rhombuses were the order of the day, much to my delight that he had enjoyed learning a bit of 10th grade geometry at the age of 2. I was just so happy he was enjoying something; he’d been so irritable, so unhappy on and off for quite some time. The preceding week I’d taken him down to USC dental school to see if a tooth had gone septic; I was looking for some cause of flares of fever and agitation. It was his tumor all along, and I didn’t know. I knew something horrible was happening but just not what it actually was. Now it was getting worse daily.
They did every test they had on him to test his brain waves, functioning, everything but the MRI until Friday morning. “The MRI will tell us for sure” I was told. It wasn’t comforting but I wanted it done. I went with Jack to the huge MRI tube–before which I’d been asked to remove any metal. I forgot I had this funny hair holder in that was pretty substantial–it almost flew off into the tube! Very powerful magnet. My little guy! There he was; I was trying to reassure him that he’d be ok, just have to go to sleep for a minute while they put the funny white medicine through the tube that made him fall asleep. “Uh-oh…” he said, and then he was prepped for the scan.
I couldn’t just sit in the room; I went down below to the first floor where there’s a meditation garden. I don’t remember if I knew it was there, or if I just found it. I sat, and I tried to meditate. I prayed. I envisioned his little spirit telling me everything would be all right…then my cell phone rang. It was only 1 hour into a 2 hour process; the doctor who had been overseeing Jack’s case was calling. He said to meet him right away in Jack’s room. I bolted and ran down the hallways into the elevator as fast as I could. The two main doctors concerned with Jack were there. It was not good. They both had misty eyes. They said, “we’ve found a mass in his brainstem. We can’t say yet what it is, but we wanted you to hear it from us, first. You’re going to have a whole new team. With oncology.” What? What? Their eyes said it all; I could tell they cared very much about Jack and wanted to make sure that I wasn’t any more shocked than necessary. I appreciated their frankness. I don’t remember what I said.
I tore down to the recovery room as soon as my pager started lighting up, and it was late–I didn’t get the original call. I was frantic! The nurse was stroking his hair saying, “he’s just fine”, with a ‘mother knows best’ tone that I actually appreciated very much. My Jack. My little man! NO…her soothing voice made me realize I have some time. I couldn’t even consider that in the moment.
So you start to think you’re pretty messed up when not even a year’s gone by and certain people are insisting that you “move on.” Well, it’s been over three years that he’s died. My little panic episodes are reminiscent of events that took place four years ago. The sun reminds me with every phase of the journey. Diagnosis to death, to mourning. Then his birthday comes. Then diagnosis again. I get the non-stop ride. I think each year it will be less and I’m going to be ok. Sometimes I become paralyzed with depression, and bewildered by anxiety.
It stays like that until I start asking myself questions. It stays like that until I can remember to remember, and cry.
