Monday, June 24, 2019

Day 17: June 23, 2019

Today felt actually... normal. It's a little weird as I think we are all still a bit on edge, knowing that this can change at any moment. What we have learned in 17 days is what we have been repeatedly told by EVERYONE at the Seattle Cancer care alliance, and any of the ER/hospital doctors we have dealt with: the first round of chemo is really just about figuring out how everyones  body responds to it, and we don't really know what that is going to look like. Which warrants a huge eye roll when heard for the ten thousandth time when your kid doesn't respond like "normal" because there is no "normal." And also, CAN THERE PLEASE JUST BE A COOKIE CUTTER RECIPE FOR THIS?


There's not and it's to no avail. Cancer is different for everyone. The treatment is different for everyone. And it's an infuriating game of try this, oops, no try that, now try this to see what actually works. The one thing that has been in the back of our heads is that hopefully at least they have the cancer drugs right, treating the appropriate cancer. There was a little bit of concern as the UW doctors asked why no one biopsied the new growths that showed up on the latest scan that snowballed all of this (the spine/kidney/lung spots) to ensure that it was the testicular cancer cells spreading, and not a different type of cancer. The chemo drugs that Oliver is receiving are for testicular cancer, but we don't really have an answer as to why the new cells weren't biopsied (and to our knowledge they weren't). So, again, we have a bit of blind faith in the doctors and this whole process that what they are doing is the correct course of action.


In that vein, and to try not to delve too deep in to what is likely a sensitive subject, I will just say: we have been a historically healthy family. I mean, we have little kids, right, so no shortage of colds, flu, trips to urgent care for the random ear infection or whatever. But, nothing ever MAJOR. Maybe once in the last 5 years have we met our deductible for our health insurance. Everyone in the family is under me on our plan, and our company is a very large firm nationally with over 6000 employees, and so we are able to negotiate very competitive rates and various plan options with our providers for our employees. I don't have any complaints about that per se, but what I have seen in just these past couple of weeks is just some HUGE flaws in the health care system in the US, despite social status, despite good health insurance, despite despite despite… I won't go in to details except to say, it is truly mind blowing and I don't know how people who DON'T have health insurance can go through something like aggressive cancer treatments requiring MONTHS off work, multiple hospitals stays, etc. It is really eye opening, a bit baffling, and honestly, I don't even know the solution. I guess you could say that because I have never been in the "thick" of it, I kind of ignored the problem (which is not ok, but I own that). Even now, I am not a part of the solution, because I'm not even really sure what that is. But, I hope that we can get there.


All of that said, back to the present- a normal day. Again, we are all cautiously optimistic that we are on a good road right now and nothing changes drastically like we have experienced on some of the days in the first couple of weeks. We are certainly not straying too far or getting too cocky that we have it all figured out. We know it might get way worse again before it gets better, but again, moment by moment is how we have to live this.


First up, day 17- little boys are excited because everyone is here (no one is at the hospital- yay!) and for no school + morning cuddles on the couch.




I was also very happy to have some tag team effort with the little boys so that I could sneak away to the gym to ride my bike. A little #oliverstrong action going on there of my own. Colleen was also able to sneak out to the gym as well, as was Justin later in the afternoon. It felt good to have a little bit of self care after multiple days in hospital and/or managing little boys while the team was in hospital.


Oliver was up bright and early, and felt like a "2.5." There has been some debate in our household about this ranking system. Two of us (Oliver and I) thought that higher stars were better (IE: 8 of ten stars as good, with ten being the best. Justin/Colleen thought 2 out of ten stars was good, with 1 star being the best). This was settled in the hospital as they found a chart that showed one star being  the best... as we all said, either way, a 5 is a 5!


Late morning, Bailey and Angel showed up to visit!



Bailey, Angel, Colleen and I all headed to Costco while Justin and the little boys were running a quick errand for their remote control cars. Oliver was really excited for a little bit of alone time, until we passed Justin and the boys on our way out of the driveway. So he got about 2 minutes of alone time. Ha! Also, Costco on a sunday afternoon? MADHOUSE.


Later in the afternoon, Nick showed up to hang with Oliver. He was amazed at the change in Oliver as well, as he had last seen him during what we now call Oliver's "vacant" stage. If Oliver is "back" we can definitely manage the chemo and side effects. It was so hard when he was just a shell of a person.






Bennett was going slightly stir crazy inside, so Bailey and I took him on a bike ride. We have some pretty large hills by us and he dang near peddled up them all by himself. CRAZY. And apparently he had some energy to burn!









Back at home, the boys were playing football!





Colleen made a crazy awesome spaghetti and meatballs dinner for OG (requested last week, but we landed in the hospital and so no dice). A few days later, and it happened! It was so fun to have all of us there. And continued happiness that Oliver is still eating! He was still a little nauseous, but we think we have that mostly under control. And the fever has stayed under control, as well.






Family photo op- love how ZERO of us are looking (except Bennett). Ha! Outake 1.



This one works. In other news: Oliver told us yesterday he is starting to lose hair. Noticed it over the last couple of days, which is about right given being two weeks in to treatment.





The following shots: also outtakes. And Bennett starting to strip....




 Oliver's other buddy, Brandon, also showed up later in the evening to hang with Nick and OG.  They are planning on at least one more visit before round 2 starts.



I spent some time yesterday evening looking at flights- we (Justin, the little boys, and I) had our annual trip planned back to the Midwest from June 25-July 3--the kids get to hang with grandma and grandpa in Kansas City, and we had planned to take off for 4 days to Kentucky (which we have done several times and always look forward to). We hadn't really reshuffled anything because we weren't sure how chemo was going to go. However, based on the last couple of weeks, it became apparent that it did not make sense for just one adult to stay with Oliver, as if something happens, it really takes two to tag team. And again, things can change in an instant so if Colleen was here and Justin and I were cross country, while we could fly back, it's just not worth it. Not to mention, even just the worry- if we were there, we'd be worried about what was going on here, even if all was ok. There will be other trips, but hopefully there will be NO other battles with cancer.

So, I had already canceled Justin's flight out, but was looking at flying back to Seattle for the days that Justin and I had planned on being in Kentucky. I figure, I can help out here if they need me, and if everything is "normal" like today, maybe Justin and I can have a fun "stay-cay" of working on house projects that have been largely neglected in the last month. So last night I booked my flight back to Seattle during the KC trip (and will return to KC to pick up the boys). I thought about hanging with the boys and grandma/grandpa, but it's better this way- they will get spoiled by grandma/grandpa in a way I would somewhat ruin so this works out (meaning: I would not be a fan of joining to go to McDonalds, but that is their grandma/grandpa treat time). While I was doing this: I got a dual massage by dad and B-nut. I'll take the love and also, Justin is rocking #oliverstrong!


At the end of the day, we are thankful for a day that didn't involve a hospital, dizziness, nausea, drama, or anything "new" we had to deal with. Tomorrow that could change, and we are becoming more adaptable and rolling with it, but fingers crossed that we have a few more of these days... or that we have a LOT more of these days! #oliverstrong


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