A Week on the Roller Coaster

I have so little free time these days that I have started writing several times, and not had time to finish. So here are a few tidbits from the past week, a glimpse into my life as a cancer-mom, written on the run as I juggle parenting three kids, working, spending time with my out of town guests, and anxiously awaiting Elliot’s CT scan results this week…

Elliot’s first time on his bike!

Monday.

Here in Opposite World, the situation is as follows :

My son, age 5, stage 4 cancer of the kidney, having had surgery, radiotherapy and 10 months of chemotherapy, is jumping on the sofa, bouncing off the walls and saying he wants to go outside to play.

My mom, age mumble mumble, stage 4 cancer of the small intestine (GIST), two surgeries and 11 years on targeted therapy anti cancer drugs, and just flew 4000 miles a few days ago to visit me, time zone difference: 6 hours, has just finished checking facebook and her emails, playing with Elliot, doing laundry and is saying she wants to go outside to play (play=shopping).

Me: age a couple decades less than mumble mumble, stage 4 lack of coffee, no surgeries ever although I did give birth three times in my life so that should count, no chemotherapy although am sure I suffer from chemo brain by osmosis, no radiotherapy, ok there’s simply nothing medically wrong with me but I’m exhausted!!!

Seriously, somebody told these cancer people to “seize the day” and they are! If any more day-seizing happens around here I’m going to have to start mainlining coffee.

 

Tuesday

I have a day off from work, and Martin too! We usually work opposite shifts, so that someone is always there for Elliot. But this has not allowed me to spend much time with my mom and sister since their arrival, without Elliot along. Shopping with Elliot is…uh… challenging. Imagine bringing a talking kangaroo along into a changing room as you try on a new dress. You know, one of those changing rooms where it’s just a curtain that separates you from the rest of the world? You get the picture.

So today Martin will stay home with Elliot while my mom, Julie and I head off on an adventure! We are driving to Montreux, about 45 minutes away.

The weather is perfect. The drive is amazing, the highway is perched of the edge of rolling cliffs covered in vines that cascade steeply down to the lake. The sharp sunshine reflects off the water and highlights the towering mountains on the other side. In Montreux we park and stroll along the quiet waterfront which is still recovering from last week’s jazz festival. I can almost see the smoke on the water. This is where the Rich and Famous live. Shania Twain owns a castle somewhere nearby apparently. The sun shines and I feel, for a brief moment, that I’ve escaped the cancer world. There is a lingering stress that I can’t shake though. Tomorrow we get the results from Elliot’s end-of-treatment CT scan, and although we’ve been told it should be ok, there is always that lingering “what-if”. Cancer is an unpredictable enemy.

I find the perfect dress. There is a minor problem in that the price has one more zero on it than I would like. Oh well, I leave it for Shania.

 

Wednesday

We’re at the hospital, in the waiting room. I dropped my mom and Julie at the airport a few hours earlier, heading home. They are somewhere over the Atlantic right now. Elliot is playing with a toy. Martin is looking at his phone. I am pacing. The stress has formed a hard lump in my stomach. I can hear my heart beating in my ears, and am trying to control my breathing by taking deep, slow breaths. I feel like I might cry at any moment, even though nothing bad has happened… yet. This moment marks the culmination of ten months of anxiety, ever since this all began.

The nurse comes and tells us we can wait in the doctor’s office. I analyze her face. Does she look calm? Anxious? Upset? Pitying? Sad? Glad? I can’t tell. SHE knows the scan results. I almost feel like begging her just to tell me. But I’m too afraid of the answer.

We sit at the doctor’s desk, waiting for him to come in. Elliot is on Martin’s lap, playing with his toy. I have my notebook out with my list of questions. My hand holds the pen, and is damp with sweat. I feel cold.

The nurse comes in and sits at a chair by the side, also with a notebook and pen, ready to take notes during the meeting. Is this a good sign? A bad sign? Any kind of sign?

The doctor comes in. He’s holding Elliot’s file. He sits opposite us, says hello, and smiles.

The smile says it all. I know it’s going to be good. I feel the stress leave my body like steam out a boiling kettle.

The scan is clear. Of the “innumerable” lung metastases at the beginning (yep, that means, too many to actually count) there is not a trace left. Elliot is definitely in remission and the treatment is finished. We can leave and only come back in three months for the next scan. I think about my mom who has gone through the three month scans for 11 years. We walk out of the hospital quickly, not looking back, almost hurrying like kids leaving school early, afraid to get caught and called back in.

 

Thursday

I’m at work, early shift. All my co-workers know about yesterday’s scan. They keep coming up to me to congratulate me. They look as relieved as I feel. I think about how cancer affects everyone, not just the one with the diagnosis. It must be so hard to just sit on the sidelines and not be able to do anything. And some have silently fought their own battles, watched their own family or close friends go through this. You only find out about this after you enter the cancer world.

I feel a freedom I haven’t felt in months. Well, 10 months and 10 days, to be precise, since Elliot was diagnosed. It’s like nothing can get me down today, nothing can go wrong, I’m riding around on a cloud.

Work is busy, but fun. One of those days where time flies.

After work I take Elliot, my teenager Daniel, his girlfriend and her mom out to a movie. It’s Elliot’s first time at a cinema. He loves it but talks and laughs loudly during the movie. It doesn’t bother me because that’s what the other young kids are doing too. We’re normal!

We decide to go out for supper, and get home around 8pm, already bedtime for Elliot. Exhaustion is silently creeping up on me. As I unlock the door to our apartment I hear the music blasting from Jesse’s room (oldest son, age 20). He’s in there hanging out with a couple friends. I stomp in to his room and pull the plug from the wall. Three sets of surprised eyes stare at me. I stomp away. Fatigue comes crashing down on me, and an overwhelming irritation, which is completely illogical, I tell myself, given the circumstances. I get Elliot ready for bed impatiently. Jesse and his friends quietly leave, Jesse quickly saying goodbye while staring at me like I’ve grown a second head.

I read Elliot two bedtime stories, both of which I find extremely annoying. I am angry at princes and dragons.

Elliot wants an extra cuddle before falling asleep and complains that his dad is not there (Martin has the late shift at work).

I fall asleep first, I think.

 

Friday

 

Even earlier morning shift. Driving to work when it is still dark out on a summer day. The highway in to Geneva passes the Paléo festival site, a huge outdoor week-long music festival with thousands of tents set up for the fans who stay all week. Three young men have climbed to the top of the fence that separates the camp ground from the highway and are hanging there, waving at the few passing cars, laughing. I try to see if any of them is Jesse, but am pretty sure none of them are. Who knows.  I am starting my morning and they are ending their evening. Time is strange.

I get home from work at 2pm, enough time to have an hour with Martin before he leaves for work. He looks exhausted. Elliot woke up at 610am. Martin worked till 11pm last night, and will again tonight. He drops a fork on the floor and actually growls at it. Elliot and I look at him like he’s grown a second head.

Elliot complains again at bedtime that his dad is not there, but then I remind him that after today is vacation, we have three weeks off work, and we will be together every day. He asks if three weeks is kind of the same as a million days. I say yes.

Now our home is quiet. Daniel is out with his girlfriend. Jesse is still out. Oh, don’t worry, he’ll come home at some point. I used to worry about Jesse a lot, but he’s ok. Oh sure, he’s probably out there doing backflips off of tall structures but hey, it’s not cancer, right? Sigh. Jesse has become one of the best Traceurs in the world. Don’t know what a Traceur is? Check this out, and then tell me if you thought I already had enough stress with Elliot!  And Daniel is doing this too, he’s quite amazing as well. Why couldn’t they all have taken up the violin? Ok I admit, the truth is, I’m totally impressed with my kids.

While the house is quiet, I do a bit of travel planning. Since we couldn’t plan anything ahead of time, we have decided to drive to Paris and spend a few days there, and then on a beach in Normandy. We have not gone away on vacation for a year. I am so excited about this trip! I almost wish I had bought the Montreux dress, so I could walk around in Paris looking fabulous and sophisticated.

Elliot’s main interest in Paris is to go up the Eiffel Tower. He has seen pictures of it and talked about it a lot, it’s the main reason we chose Paris for this vacation. Oh, and by the way, he INSISTS we have to walk up the stairs. There are 1665 steps to the top. So, anyone want to take bets on where we all collapse, or who cracks first?

I try to find a few other activities we could all enjoy in Paris. It’s not that simple, we still need to avoid places where there are lots of kids. Chemo wipes out your previous immunity, and there is still a chicken pox epidemic here in Europe, where no one gets vaccinated against it. It could be very serious if Elliot catches it, but he can only be re-vaccinated six months post-chemo.

I get a message from a friend saying congratulations on the scan, and that she is happy all this is behind us now. I feel the irony. I decide not to think too much about the next scan in three months, or in six months, or the fact that he’ll have regular scans for years and that there are no guarantees.

Martin gets home just before 11pm. It’s official! We’re on vacation! We now have one million days together.

One thought on “A Week on the Roller Coaster

  1. I like that you groups all the thoughts together. Whenever I get an idea for a post (but am distracted/busy/lazy) . . . it just evaporated after about five minutes. Maybe it’s for the best. However, your week recap was really great. Glad to see you made it to the vacation!

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