There's a Monster at the end of this Couch
We arrived at the Mayo Clinic early Tuesday morning expecting it to be a long day. Bryan was scheduled to see oncology and then the radiologist and then to head to the infusion center for the first in a series of daily chemo infusions.
When our oncologist's nurse practitioner entered the room she came in cheerful and right away said, “Well, good news.”
“So you are all set to start chemo,” she started and then stopped herself sitting down, “Well, first of all have you seen this scan.” She touched some papers she had carried in as she said it.
Bryan had a PET on Friday and a CT on Saturday.
“We picked up a copy of the report.” Bryan said, “But we haven’t talked to a doctor about it yet.”
“We left messages for Dr. B at least twice yesterday. But didn’t hear back,” I struggled to keep the frustration out of my voice.
“We’re anxious to talk to someone about it. We’re not sure we’re reading it right.” Bryan added.
“We think it’s good," I cut in, "but we’re having a hard time...” I trailed off and she broke in. “No. It is good. It’s really good.” She said scooting her chair a little closer. “In fact it’s so good that there’s a big debate going on over email between your oncologists at UCI and UCLA and Dr. B here at Mayo about how you should move forward.”
“Who’s arguing for what?” Bryan asked.
“Oh it’s not really an argument. Debate's not the right word, just a big discussion. Each of them could argue for both sides. In fact, you should see the emails, it’s often big long paragraphs from one of them about what you should do followed up by ‘on the other hand’ and a paragraph about a counter view.”
“Ok, so what does that mean?"
She leaned back in her chair, “Well it means you have two choices. You can go ahead and do chemo today, because chemo is still very appropriate in your case. Or you can choose to wait and give your body a break and we would scan again in six weeks to see where we’re at.”
“I thought we had to wait three months between scans unless we were on a trial,” I said.
"Yeah, that is standard, but in a case like this we definitely don’t want to wait that long.”
“I definitely don’t want to wait that long,” I said quickly.
She continued, “Or, I guess you have a third option, since this great response could be some kind of delayed response to the Immunicore you got at UCLA, you could go back to them and see if they would put you back on that trial.”
The thought of driving back and forth to California every week again sort of made my stomach turn but I didn't say anything.
“I think I’d like to give my body a break. I’m still recovering from radiation and it would be nice to be a little more healed before doing another treatment.” Bryan said.
“When did you finish radiation?” She asked turning on the computer and beginning to search through Bryan’s records.
“It hasn’t been long,” I jumped in, “Maybe two weeks or less.”
“I don’t know, my sense of time is all messed up.” Bryan added.
She found what she was looking for and replied, “Yeah it’s only been about a week and a half. So you’re still really close to it and feeling the side effects. That makes sense.”
“Does it make sense logically that chemo could actually be detrimental right now since my immune system seems to be fighting things on its own right now and chemo would knock down my immune system. Is there an argument for that?”
“Well, we don’t really know why your scans were so dramatically different from before. I mean I looked at your scan this morning and I thought, ‘oh this is good,’ but then I looked at your last scan before this and I was like, ‘oh this is really good!’” She paused and laughed a little and then leaned back, “Yes, that is logical and it does make sense that chemo could be detrimental right now, but it’s also still really appropriate in your case and both of your doctors can make an argument for it as well.”
“Can we see the actual scan images?” Bryan asked.
“I think we’re just having a hard time really believing it.” I added.
“Yes. Yes of course.” She pulled open the images and turned the computer screen towards us.
“Do you know what you’re looking at,” she asked.
“Yeah, we’ve seen a lot of these now.” I answered feeling pretty confident in my ability to recognize what was what on the scan images.
“At one point I had so many tumors my scans looked like Swiss cheese.” Bryan half joked.
“Oh that’s horrible! Don’t say that,” she replied as she stifled a bit of a laugh.
I thought back to that scan, the one that looked like Swiss cheese, the one that moved his diagnosis to stage four and slapped the label terminal disease on our lives. I can remember it so clearly despite the fact that it’s been 4 years now. Is that all? It feels like longer.
I looked at the screen in front of me as she moved from one slide to the next, slowly working from Bryan’s head down. The difference between that scan in my memory and this one is astonishing. They say seeing is believing and I was starting to believe. I could feel fragile hope deep in my gut, like the little seedlings in my garden, like a delicate breakable piece of sea glass.
“Here’s what I’ll do,” she says. “I’m gonna put in an order for scans in six weeks and schedule an appointment for then. But if at any point you start to feel off or feel something growing or just change your mind. Just call and we can start chemo any time. We still have the order in and it’s still appropriate for you to do that. But we’re all comfortable with giving your body a little break if that’s what you want.”
Minutes later we were out of the office and heading downstairs to see radiology. A quick follow up and we were done and walking out of the building.
“I think we should go celebrate,” I said and we decide on one of our favorite breakfast places for a late brunch. But we were both still spinning from the sudden change. “I don’t know what I feel” and “I’m still taking it in” and “I don’t know what to make of it” and “what now” were common phrases repeated by each of us.
That night I write this to our prayer support team:
"It's strange but some times good news results in this adrenaline release which is utterly exhausting... All those fears and tensions just released in a puddle that we can't get away from. So if you see us and we're not as exuberant as you might have thought we'd be, know that we are just recovering, just trying to pull our mess back together. We are bruised and weary and stained, but we are still celebrating."
Ever since that day and that shift in our circumstances I've been trying to figure out how to describe it to people who haven't experienced it. I think the best way I can explain it is to say it's like there's a big monster that has invaded your house. He's attacking you. Hurting you. But you're fighting him. You've got your sword in your hand and you're doing whatever you can to fight him off. Sometimes he's winning, and sometimes you are, but you're fighting. You're active.
And then a season like this one we're in now comes and the monster shrinks back and sits down on the couch. Maybe he even goes to sleep. He stops going after you and you have a moment to catch your breath. You're grateful to put down your heavy sword, but you also don't want it to be too far away.
You're told, and expected, to go about your normal life, but the thing is, the monster is still in the house. You don't know why he stopped attacking you. You don't know if he'll pounce on you at any moment. But, somehow in that unknown you're suppose to go about your normal life, sit down on the couch next to him and pretend he's not there, maybe even celebrate as if he isn't there.
But, you know he's still there, right next to you.
Can you imagine that? Can you feel even a little what it might feel like. This is the feeling we are sitting with in this season.
We are grateful, but on guard. We are resting, but anxious. We are trying to go about normal life, but we don't want to get too relaxed, too far from our swords, too comfortable. It's a hard environment to celebrate in, and yet we are trying.
The very same reason it's difficult to celebrate is the same reason we know we need to, because the monster could attack again at any moment. Because this is our "one wild and precious life" as Mary Oliver says, and we don't want it to pass by without having lived it. Because living and dreaming and celebrating are essential for the battle. They make the battle worth it.
We've had this monster with us for a long while. We have had many seasons where it has attacked us and a number of seasons where it has sat down on the couch. We have battled and we have rested. But we've done more battling than not and we haven't always rested, dreamed, or celebrated well during the seasons of retreat.
In the past, when the Monster sat back on the couch and stopped fighting, I felt like I had to tip toe around, afraid to disturb him. Like a sleeping baby that I didn't want to wake or anger. Sometimes I felt so exhausted from the battle that I just wanted to curl up on the couch and go to sleep - I could care less if there was a monster there I just needed to crash.
This time around, I feel a bit more like a mom who knows her child is going to sleep for exactly an hour and dashes from one thing to the next trying to make the best of nap time. I'm trying to pour myself into each day. To make the best of these six weeks that I possibly can. To get as much as I can done, and not just the daily urgent stuff, but the big picture dreaming stuff too.
I've written more than 30,000 words in the past week, not counting a business plan I started working on or this blog post. I've spent hours editing the e-book I'm hoping to release by the end of the year and I've mocked up at least four app designs. I've taught yoga and recorded a new yoga video for my youtube channel. I've stayed up late and woken up early. I've grasped at whatever feels like it will help us create memories and build connections... while we can. Because I've learned by now, whether I tip toe or not, this Monster is going to wake up and come at us again. So I may as well get as much in while I can.
But, really, this manic energy is just another outlet for anxiety. It's a way to feel in control of my life... which of course I'm not. Good or bad, that's where I'm at right now. And it's a strange place to be. Especially when Bryan just wants to crash on the couch and sleep, too tired from the battle to do anything else.
But, this is life with cancer: the swings. The highs and lows. The big battles, the extreme exhaustion, the desperate grasping to make a life in the midst of the unknown, the attempt to find a new normal that is constantly changing and changing again, the attempt to sit down next to the monster on the couch.
...And perhaps to find some grace and peace even here, even with a monster at the end of the couch.
Grace and peace,
Bethany