Trucking Along

I started this post a while ago. It's been hard for me to write recently. But I found a piece to add to it that really summed up perfectly why this post started over a month ago and ended with the word "But" halfway through a sentence that....

Things here have been moving along. Slowly but surely days pass, and things get done, or not done. I sort of have a schedule, but it's not at all glamorous. In fact, most days I feel pretty damn lost. 

I've found myself feeling pretty useless lately. Yah, I'm doing well, I'm moving well (discharged from PT ), I've gained back the weight (now I need to stop gaining 4lbs a week! - paleo here I come!), and I can do the laundry and play with Lochlan, but (this is where I had stopped...)

I'm still trucking along. There have been some amazing things happening for CareAline, but I can't devote nearly enough time to it - my brain fog is very big on this drug, and it definitely doesn't make focusing on anything easy, or even possible sometimes. We were accepted into the MassChallenge accelerator in Boston for this summer, so we are looking forward to really focusing in on growth and making CareAline a standard of care item. 

Lochlan has been doing well in his new school. He is a bit combative with us, but seems to be sweet with everyone else. I am going to be pushing harder over the summer (when he is not in school) to get started on Art Therapy (we all need to start going. we found a great place, now to make sure they figured out how to take massHealth). He has some camp lined up for the summer, and I'm hoping to find an energetic student to spend some time with him this summer while we have days that we need to be in Boston for the accelerator (if you know of anyone...).

My last scan showed partial remission. I was really hoping for no active disease (even though I knew that there were still some sizable nodes in there), but partial remission and everything still shrinking (my neck nodes are now all within the normal size range - with just one up taking PET dye!) is a move in the right direction. 

I've been falling into bad food habits. Saoirse's birthday came on me hard this year. For over a week I was in a terrible funk and the day of her birthday things fell to pieces. Sugar and chocolate have been my crutches. I'm trying to get back on the low carb focus. This week I'm basically eating bacon and eggs. So far so good. 

I'm cleaning out the house! I've been doing it for a while, but I'm making a big push right now. I've gotten my bedroom pretty well cleaned up (a few things left to go through on the dressers), and I actually cleared out the cooperage!! and have it almost usable as an office space! Lochlan's room has always been pretty good, but I have a few things to pull out and chuck from the crawl space in his room that will make a little extra storage space. The dining room is coming along - I finally hung my tile shelf that Mike made for me. I have about half of the tiles up, and we will make two or three more shelves for over the other windows in that room. I'm going to be getting rid of the indoor play kitchen and taking back that room as a dining room. Then I can FINALLY finish my awesome dining room table I'm building (seriously - you are all going to want one!). Then comes the office..... that room has been swallowed by paper and random shit for faaaaar too long. Its time to take it back and turn it into something more useful - namely a play room (yay for taking back the living room!) and a guest room when we need it. I feel like I've been swallowed by "things" and I want to take back our space and not have so much chaos around us. 

Then today I saw this in a Hodgkin's Facebook group I am in. I felt like it just really captured what it's like to be in this journey. I don't know the person who wrote it, but I think it's the best description I've seen about what it feels like to be the person with cancer. 

What's it like to go through cancer treatment? It's something like this: one day, you're minding your own business, you open the fridge to get some breakfast, and OH MY GOD THERE'S A MOUNTAIN LION IN YOUR FRIDGE.

Wait, what? How? Why is there a mountain lion in your fridge? NO TIME TO EXPLAIN. RUN! THE MOUNTAIN LION WILL KILL YOU! UNLESS YOU FIND SOMETHING EVEN MORE FEROCIOUS TO KILL IT FIRST!

So you take off running, and the mountain lion is right behind you. You know the only thing that can kill a mountain lion is a bear, and the only bear is on top of the mountain, so you better find that bear. You start running up the mountain in hopes of finding the bear. Your friends desperately want to help, but they are powerless against mountain lions, as mountain lions are godless killing machines. But they really want to help, so they're cheering you on and bringing you paper cups of water and orange slices as you run up the mountain and yelling at the mountain lion - "GET LOST, MOUNTAIN LION, NO ONE LIKES YOU" - and you really appreciate the support, but the mountain lion is still coming.

Also, for some reason, there's someone in the crowd who's yelling "that's not really a mountain lion, it's a puma" and another person yelling "I read that mountain lions are allergic to kale, have you tried rubbing kale on it?"

As you're running up the mountain, you see other people fleeing their own mountain lions. Some of the mountain lions seem comparatively wimpy - they're half grown and only have three legs or whatever, and you think to yourself - why couldn't I have gotten one of those mountain lions? But then you look over at the people who are fleeing mountain lions the size of a monster truck with huge prehistoric saber fangs, and you feel like an asshole for even thinking that - and besides, who in their right mind would want to fight a mountain lion, even a three-legged one?

Finally, the person closest to you, whose job it is to take care of you - maybe a parent or sibling or best friend or, spouse - comes barging out of the woods and jumps on the mountain lion, whaling on it and screaming "GODDAMMIT MOUNTAIN LION, STOP TRYING TO EAT MY WIFE," and the mountain lion punches your husband right in the face. Now your husband (or whatever) is rolling around on the ground clutching his nose, and he's bought you some time, but you still need to get to the top of the mountain.

Eventually you reach the top, finally, and the bear is there. Waiting. For both of you. You rush right up to the bear, and the bear rushes the mountain lion, but the bear has to go through you to get to the mountain lion, and in doing so, the bear TOTALLY KICKS YOUR ASS, but not before it also punches your husband in the face. And your husband is now staggering around with a black eye and bloody nose, and saying "can I get some help, I've been punched in the face by two apex predators and I think my nose is broken," and all you can say is "I'M KIND OF BUSY IN CASE YOU HADN'T NOTICED I'M FIGHTING A MOUNTAIN LION."

Then, IF YOU ARE LUCKY, the bear leaps on the mountain lion and they are locked in epic battle until finally the two of them roll off a cliff edge together, and the mountain lion is dead.
Maybe. You're not sure - it fell off the cliff, but mountain lions are crafty. It could come back at any moment.

And all your friends come running up to you and say "that was amazing! You're so brave, we're so proud of you! You didn't die! That must be a huge relief!"
Meanwhile, you blew out both your knees, you're having an asthma attack, you twisted your ankle, and also you have been mauled by a bear. And everyone says "boy, you must be excited to walk down the mountain!" And all you can think as you stagger to your feet is "fuck this mountain, I never wanted to climb it in the first place."

— Caitlin Feeley - the one, the only, the magnificent.

"Fuck this mountain."

I'll try to write more. It feels good. I have some stories and things that I need to put down on "paper" anyway. 

Limp means alive.

I wrote this post a while ago and hand't had the nerve to post it. As I've read it over a few times, I feel like I want to share it. Please don't take this as anything more than what goes on in the mind of me while I'm idly "trolling" Facebook trying to forget some of my negatives.

As I was giving tips to another mom one day about how to handle anesthesia with a toddler, it came to my mind about going back into the OR and holding Saoirse while they put her under (so I would be the last person to hold her awake). It then occurred to me something interesting that goes through your mind in that situation. They go completely limp and "lifeless" in your arms, and at the time, you feel like they are dead in your arms. 
But it's interesting what the reality is - limp and floppy means alive. I particularly remember holding Saoirse after she died. She was hard as a rock. Stiff very quickly after death, and very unreal feeling. It's strange how your perceptions change and how experience reminds you of the odd things you know as a parent of a dead child. 
For a second I thought about writing a note saying 

"She will go limp, and it will be strange, but remember - limp means alive - trust me, dead kids are definitely not limp." 

But I thought better of it. Not exactly a great put in for someone who's child is about to go through a procedure. 
So who DO you say things like that to? Those thoughts that would shock those that haven't gone through it, and scare them half to death in reality. Others who have been through it? And remind them of that pain? Or are they all like me - strangely satirical about their dead kid. It struck me that night that I didn't know who to say my strange "quip" to, so it stayed strangely in the air - searching for a compassionate ear to fall on, one that wouldn't think I was diving-off-the-deep-end crazy.