Jenn: Day 39: June 15, 2019

Believe it or not, despite the daily regurgitation on this blog, I am generally not a very open person. I think that most people who know me well would agree with that. I have a small tribe of people who I am really close to. These encompass the childhood/high school/college and some friends who I met in our adult years who have known me for years- the kind of people who you can pick up the phone with and talk like you just spoke yesterday, even if it's been 6 years. In this vein of getting close to people, I suppose I have always had either a chip on my shoulder or some sort of fear of letting people get too close. What I've learned as I've grown up (and am probably still growing up), is this fear is likely an irrational one driven by the fact that I'm adopted (I was as a baby) and always feel like everyone in my life is going to leave me....I mean, I think it's a deep seeded thought of if my birth mom left me, why wouldn't any one else? Back to the being good enough thing. And that's not to say I didn't have a good and happy and all things butterflies and roses childhood and wasn't better off by being adopted- I totally did, and all true. It's just one of those things, that despite all rational, it's there. It's funny the things that shape you as an adult that were "seeded" as a kid.

HI THIS GOT DEEP QUICK. My name is Jenn, nice to meet you. Also, oh my GAWD.

I am sharing this because it is becoming harder to write these as we check down the days. I could just post pictures, say Oliver is doing X, Y, or Z and call it good, but that feels fraudulent too. I mean, the sheer magnitude of emotions we experience on any given day is only even briefly touched in this forum, but even just that-- it just feels SO PERSONAL. I am letting whoever reads this in to part of my life (and part of our lives)-- a part of our lives that I would struggle to express adequately if I were talking to some people face to face. And each day, there seems to be some element of personal growth that occurs in this process. That frankly is the only way we can justify the why of all this happening. Somehow it was meant to make us grow. Perhaps it is allowing me to be more open and vulnerable and that is one of the lessons. Another obvious is bringing our family closer together.

I have also had to tell people who I am not close to what is going on personally, which is not something that I am used to. But when you are largely MIA, because you have to be, it seems only logical that you offer the full disclosure of what's going on. It's been awkward and again, a growth opportunity for me. I am not used to telling people who barely know me such intimate details of my personal life, even if it is just the basics: dealing with a kid with cancer. One such person yesterday said something to the affect of "I just don't understand why this doesn't ever seem to happen to evil people." I don't think we are ever going to understand the WHY. Ever. I mean we could beg, barter and plead with all gods of the world, buddha, the universe, whatever, and it STILL might not make logical sense.

We have to let go of that and realize with a sort of peace that we won't ever understand. It will always seem unfair if we get to the root of it. But we HAVE to focus on the positives. It's allowing me to be more open. More vulnerable. It's allowed us all to slow down and refocus on what's important. It's brought our family closer than before. It brought Colleen in to our lives, and whether she likes it or not, she's now got 4 more people that are not going to let her out of it. It's allowed us perspectives across the board that are infinite in nature and couldn't have been learned otherwise. And on and on.

But, some days, it's still hard to write this stuff.

Day 39 started off with round 2, day 15 of chemo at SCCA. Early morning appointment at 7am, so the crew left at 6:15am for blood work, etc.

After bloodwork, the track is to head up to floor 3 to meet with the doctor. Apparently everything looked great again today. Vitals were good, blood work was awesome, counts were exactly where they should be. They do not look at tumor markers yet, but they may do that before the start of round 3. And weight was on par again, too. Yes! He was feeling pretty yucky this morning, and ended up taking some THC before heading in to try to take the edge off the nausea.

There was a LOT of waiting going on after seeing the doctor to get set up for chemo infusions. Apparently there was some mass confusion at SCCA today. They had opened up a new floor to accommodate more infusions, and it was all kinds of messed up. Luckily the infusion, once it was all sorted out, was the quick 20 minute one.

I didn't go to chemo, as I had previously scheduled my own round of fun. I have been breaking out in hives daily for about two years. While I've seen my primary care doctor for this, I figured it was time to see an allergist. We'd done a food intolerance blood test with my primary care doctor, but even with eliminating the "sensitive" foods, still no improvement. So, a while back I scheduled out this appointment with an allergy doctor. Yay. Doctor fun for everyone lately!

I visited with the doctor, and even found out I grew two inches in height somehow (told you I was still growing up?!), and then they did a skin allergy test for mostly all nuts and sunflower seeds (which were thought to be pretty big allergens in the food intolerance test, especially sunflower seeds). I literally tested at ZERO for everything, and even had a minimal reaction to the test histamine spot, in terms of how big it got. What the hell?! GOOD NEWS! YAY FOR PEANUT BUTTER IN MY LIFE AGAIN! I used to LIVE on this stuff, as well as all other nuts, and so this was amazing to find out. Bad news: we don't know why my body is pissed off. So, they sent me off to get some blood work done. Likely some sort of autoimmune thing- possible thyroid issue, even though I don't appear to have any other symptoms of a thyroid problem. But, I've definitely seemed to have a hormone imbalance the last couple of years, which could all be interconnected to this. We'll see what we find out.

But, in the meantime: PEANUT BUTTER! Also, he gave me an allegra to take. I haven't ever taken anything for the hives... I'm stubborn and I hate meds. I KNOW. I even heard him saying to the nurse: "Believe it or not, she's never taken anything for this." Ha. Anyway, I took an allegra and had NO HIVES. I know this sounds silly, and like DUH, but again, I hate meds. I'm also annoyed that this "fixes" it... it feels like a band aid and I just want to get to the root of the problem.

Back at home, our other injured friend was milking it for all it was worth. "All I can do is watch TV, mom." "My shoulder hurts." "I need some medicine." He is SO going to milk this. We have a visit with the pediatric surgeon scheduled for Friday.

Oliver got home from chemo and promptly passed out. For whatever reason, this round just knocked him out.

Little did we know, it was about to get a LOT worse. A couple of hours later, he was freezing and shaking, and just said his stomach felt like ass. I gave him a Zofran, and he said he was ok. Justin/Colleen and Bennett all left to pick up Owen from a friends. On the way out, Justin said to me "just watch him." Ok, if Justin is saying that, all of a sudden my adrenaline is rushing. Something is not good, that he sees and I don't. I kept working away, and about 5 minutes later I hear "Jenn?" "Yeah?" "Can you get me a bowl?"

Uh oh.

I run in and grab two bowls. And right as I handed him one "I am totally going to hurl." And hurl he did. The poor guy. GAHHHH. I grabbed gloves and a mask, as you have to be super cautious with any sort of bodily fluids with chemo patients, and as another learning experience, handled puke like a boss. He said he felt a lot better afterwards, but I felt so terrible that he felt so bad so as to throw up in the first place.

Justin and Colleen and the kids rushed home, and it went downhill from there. Surprisingly the puke was not even the worst part.

Apparently there is a thing called a bleo fever, which is a total spike in fever after this particular chemo infusion. His fever, quite literally, spiked in less than an hour from 98 to 103.8. And he puked somewhere in the middle of that. We called the center right away and were lucky we connected directly with his nurse and doctor who said, oh yeah, Oliver has not experienced that yet, but actually this is a pretty normal response. WOW. We were given a regimen of giant doses of Tylenol and advil to follow. If the fever didn't continue to go down and get under the "threshold" of 100.9, then we would know it was an infection which means- ER trip right away. If it continued to go down, then we knew it was the "bleo fever" and to just stay the course. It was AWFUL to see him in the throes of this fever. He was freezing and shaking profusely and then a few minutes later, sweating unlike anything we have ever seen. At one point, I just remember saying, ok Oliver, ten minutes and I promise the Tylenol will kick in. You can do anything for ten minutes. Chemo sucks. Cancer sucks. So hard core. I'm not kidding in that this period of time was Scary. With a capital S.

We were able to get him changed and finally resting. His fever continued to come down gradually so we were doing high fives for avoiding the trip to the ER. After it started to come down, his tummy just felt terrible. So, we started the normal cocktail of THC, Zofran, and Ativan. At around 7-8pm, we felt like we had hit the crest and turned the corner uphill. Fingers crossed.

Kids were pretty good last night at just chilling. There was some amount of TV, but we were able to get them off of it for a while!

With a bit of a volatile day 15, we are on to the last week of round 2, which should hopefully be a successful recovery week. We are hopeful that it will be like round 1 in that by the end, Oliver starts to feel more like his old self. It should technically be downhill from here (until we start round 3), but as we know, seems like anything can happen at anytime. We have our fingers and toes crossed that the next week is low key. #oliverstrong.

Special shout out to Colleen's friend Sherrie, and granddaughter Bella. Her daughter, Amanda survived cancer and went through treatment at SCCA too (stories we LOVE to hear!)