While it's a nice break and feels like something "normal" (whatever that even really is), it's still a bit (a lot) restricting. Cancer does have the power to take some freedoms away, freedoms that we all take for granted. I was thinking about that the other day as I was driving to the airport and then flying. It's a luxury that a cancer patient doesn't have- to travel. Among other things in the same vein. As a 22 year old college kid used to doing whatever, it's still, at times, unfair to have your world halted in this way. Oliver can't go just anywhere. He's not in school right now, he's not working. He has to be careful with who he's around because his immune system is so compromised. He pretty much always has to wear a mask to protect himself. Even AFTER treatments, he is planning to be in our care at our house for possibly even up to a year. The other day, after hearing that the side effects of chemo can be as rough as the actual treatment and can take up to a year to work out, he asked us the other day if we were ok with him being here possibly up to a year post chemo.
Some people are able to carry on more "normal" lives during chemo and treatment for cancer. These are the people who go in for infusions once every couple of weeks for a period of time, and don't have aggressive 21 day cycles with just a few days "off." Unfortunately, this is not Oliver's story and he does have the aggressive treatments, but we are happy for the times where it does feel like a rhythm outside of hospital walls.
We brace each day for any unknown. Will his tummy feel ok? Will his fever spike? And we are all bracing for what is to come here in the next couple of days with the start of round 2. We know there will be changes in the dosage. We know it will be more intense. But we don't know how that will impact him, or us as his caregivers. We at LEAST know now that the meds that they prescribed to help him with the side effects, did no such thing and made the side effects WORSE. So at least we have learned there what does not work. But how will more chemo impact him, and how will we be prepared to help him through it? We just don't know right now. Last night Oliver came in the door after dropping a friend off, and just blurted out: "Jenn, when are you flying back to get the kids? Are you going to be here on Monday when round 2 starts? I'd really like you to be here if you can since there's so much changing."
I paused. And almost cried. And both Justin said at the same time: "That's all she/I needed to hear."
While Oliver is by far the one most impacted by all of this, all of our worlds have been shifted and rotated as well. The way our work looks, the way our summer looks, the way our daily lives look- all different than planned or as they were in the before life. But that said, I don't think any one of us would change anything. I think we all feel more empowered that we are ABLE to be here for Oliver. And upon asking, we will drop anything and everything we can to support him through this.
OG joked the other day in response to something (that I can't recall) that he is "so excited to start chemo again." We all laughed but I think deep down, we are ready to get on with it. As we get closer and closer to round 2, the anxiety of the "what ifs" starts to build. We can't go under it, we can't go around it, we have to go through it. And through it is just what we plan to do, with all guns blazing.
Day 23: started off with a bit of a walk for me to walk off the soreness of the gym from the day before. It was a much cooler walk than the one a few days before in Kansas City.
I got back and some of Colleen's friends, and Oliver's friend, had arrived from east of the mountains to have brunch and hang out for the day. It was so lovely and the weather was perfect!
With hair falling out and the sun shining, Oliver was getting some heat on his head. Baby hat to the rescue!
A little walk around the neighborhood after brunch.
A picture of Colleen and her girlfriends. It was so awesome to meet them and spend some time with them.
And Oliver's friend was such an amazing young lady as well. I guess they have been friends since elementary school!
Back in Kansas City, the boys were having a blast with grandma and grandpa (duh). They spent the morning at the trampoline park, and then the afternoon at some sort of sports place (didn't really understand the details on that). The night cap was another trip to the water park! As my dad said, he and my mom are anxiously awaiting the return of the varsity team to take over for these monkeys. We miss them like crazy, but know how much work they are. I think it also is hard when you are NOT used to the routine of having high energy kiddos. I actually feel really bad about possibly changing my flight for a day (to fly back Tuesday so I can be there on Monday to meet with the doctor/round 2). I don't want my parents to feel like I'm putting the kids all on them, and I don't want the kids to feel slighted either. I keep having to remind myself that it's one day. They are in good hands. This is obviously an extenuating circumstance. And it's really important that we are there for Oliver to meet with the doctor and get our bearings for round 2. But with all of this, man you just feel pulled.
Yesterday afternoon, we attempted another bike ride. I KNOW. After the day before.... what the hell was I thinking? We left from the house and attempted grand ridge, which apparently (as Justin tells me) is a cat 1 mountain bike race. We just kept going and what do you know? With DOING IT MORE, I was actually not half bad. We climbed and climbed and climbed and Justin said, dang you are actually a good climber. Once I get comfortable with the freaking obstacle course (IE: rocks and roots), I do ok. He kept saying, do you want to keep going? Sure? Why not? No kids at home, and it's beautiful out and what do you know, I'm actually having fun!? We got to the top of the ridge and were about an hour in and he said, so do you want to turn around or keep going- we are about 1/2 way. I guess we'll keep going! At the end of the day, I DID IT ALL! It was about a 20 mile ride, which is not that big of a deal, but I did the mountain bike stuff. Amazing!
This was the point where we were in the middle of nowhere and Justin said to me "we are able half way." I died a little bit, and then kept chugging along.
We have had more and more bracelet photos coming in. I can't even tell you how awesome it is to get these! It warms our hearts, it warms Oliver's heart and it is a show of solidarity for everyone supporting Oliver right now. #oliverstrong.
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