Day 20: June 26, 2019

I had an interesting conversation the other night with a friend who I don't really know all that well, but are connected through our kids. We somehow started talking about Oliver, as his diagnosis and his treatment right now are a common thread of my life and so it just seems to come up.... I almost throw up the awkward sentence without even thinking about it, oh yeah, and so my son has cancer. I should probably be more sensitive to the fact that it makes most people squirm, but I'm not and not because I am intending to make people feel weird but it's just SUCH a part of our lives right now, to  not say something would be like ignoring a giant piece of food smack in the middle of someone's forehead and not saying anything at all. The lines are just interwoven in to every part of our lives right now, for better or worse. In this case, luckily, my share wasn't awkward at all.  And the response that this person had to me and said to me resonated with me. She so eloquently said what we, as caregivers, have been feeling these past few weeks.


"I was with a friend through his cancer treatment 5 years ago so while I wasn't in the thick of it, my cancer cherry has been popped and I remember some of the realness of cancer treatment. I think one of the hardest things for me, as one of the people around the patient, was that I was also changed by my friend's journey, yet externally I seemed...the same, still? A sick person makes sense in a hospital or cuddled up in a quilt; I was a well person who LOOKED like I made sense at the grocery store, but I was someone who loved a sick person and the grocery store seemed INSANE to me. Life continued outside my body exactly the same, but inside I was in a completely new place. Like the couple in the movie Beetlejuice- they come home one day as ghosts, past the world they're still living in and what do you do? I guess you keep putting up that wallpaper in the attic? There was this mismatch between insides and outsides, that I remember made me feel like I was extremely alone when I was around other people.... I just wanted to share that with you because if you're feeling the same way, you're not alone."


Wow. Just wow. It took me two days to process that.


I couldn't agree more. And I think I have eluded to that already in this forum, but probably have not expressed quite so perfectly. What is so weird for all of us, as caregivers, is we are FINE. Externally, we are fine. But like this friend said, there is a mismatch between our insides and outsides. We are forever changed, but externally NOTHING has changed.


There are some people who have asked how they can also help care for Oliver. My .02 on that is that is that none of us really know HOW. We just DO. If you love someone, you care for them by loving them. By doing what you know needs to be done. By holding the puke waste basket. By not only being in around in the best of times.  By not letting your own needs and fears get in the way. By not being selfish, but by being selfless. Some people just don't have that quality, and I expect that they never will. By realizing, 100%, maybe even 110% that at the end of the day, nothing will ever be as it was before. This is something that will change all of us that are in the thick of it, as well as Oliver, forever. While the outcome is hopefully positive, he will forever be subjected to being poked and prodded and having scans, and anxiously awaiting the results of those scans. This will be his life going forward.  There will come a time, I'm sure, where we won't be regurgitating our current state: "going through cancer treatment" but it will be ever present, because it's a life change. The incarnation of the mismatch of what this does internally to what everyone sees externally.


I think why I am saying all of that, is because I had a perfectly "normal" day with the kids back in Kansas City. AND IT WAS SO WEIRD. It just feels unsettling to go from hospitals last week to playing with the kids this week. And I love it-today was a blast, don't get me wrong. It just feels.... weird.


In KC today, we took the kids to Worlds of Fun/Oceans of Fun for the first time. I think they were fans! Starting off the morning trying on their floaties for the water park later in the day:

Owen calls this the Jennifer face... I made the comment a few weeks ago when he gave me that face that I used to be told that was the Jennifer face. He hasn't let it go.

Walking in to the park!

Yahoo! Fun times!

 First ride of the day! Bennett was really excited to ride the horse.

We then found our way over to the children's area. We got lucky on a slightly cooler/overcast day, though the sun was intermittently out. And even better, it wasn't super crowded.

There was also a little petting area, which the kids LOVED.

On a little basket ride where if you turned a dial in the middle, it spun the basket. Owen almost made grandpa puke in theirs. Haha.

Their favorite rides (they said) were the two water rides we went on- a log flume type of thing and a river rafting one. They loved getting wet. I tried in vain to get Owen to go on a big roller coaster with me, but no dice. Maybe next year.

We spent several hours at Worlds of fun and then made our way on to Oceans of fun, but first: lunch stop!

I got caught up midday to everything going on at home. Oliver was doing great, no fever, eating, and still feeling like a 3 out of 10 (or 7)… Lexi visited in the morning and they had some family (Colleen's) visit in the afternoon. Hooray for another low key day for Oliver. I truly think these are the weeks that are going to fuel the chemo weeks.

Back in Missouri, we played at Oceans of fun for the afternoon. I think the kids could have spent all day there in the water. They loved the slides and the wave pool. Next up when I get back to Seattle: swim lessons!

Proof that I even joined in. Mostly I just didn't want the kids to drown so was ready to go full on lifeguard mode if I had to. Ha!

Towards the end, they got to be a little tired and cranky...long day! But once they got a little food (and a car nap for B, they were ready to go again!)

Back at home... ready and playing their hearts out again. They truly do not stop.

Yesterday evening, Nick joined Oliver again. It is so good that Nick is always such a good friend to Oliver, and especially now. He doesn't live super close but he's driven up the last few days to hang with him. We should all be so lucky to have a friendship like Nick and Oliver.

Apparently Nick even went on a walk with Oliver! I heard there were two walks yesterday again, too!

And of course, Justin and Colleen made dinner for everyone. I just received their food porn pictures.

Oliver's hair continued to fall out yesterday. As Colleen said, he kind of reminds me of a meth addict that keeps picking at himself. I guess even his arm hairs are falling out, which makes sense, but just did not even occur to me that those would also fall out. The things that you find out that you just never would have thought about before...

He's got a patchy bald thing going on top of his head right now.

Colleen sent me this picture-- a scrapbook that her mom made for Oliver. This picture is so sweet, and it is so cute that she refers to her grandson as a Tiger (and you have to love the baby Ollie in the Tiger costume!)

Again, a pretty low key day. A day that will fuel next week as we start our 5 day block on Monday, which are again, the 8 hours of chemo all day every day for 5 days straight. Grueling is the word that comes to mind. The visitors, relaxation, fun, and "normalcy" of this week are going to get us through the cycles on. This saying exemplifies this to a tee: