I remember one other time feeling this way, and I share this because the feeling is similar. Bailey, our oldest son, has had some struggles of his own that we have worked through as a family. I may write about it in more detail someday, with his blessing, but because I don't yet have that, this will be a little vague (although the similarities between him and Oliver are sometimes parallel). A few years ago, I distinctly remember sitting on our bed at about 10pm wondering if we would ever see him again. I remember the exact look of doom that Justin and I gave each other. And that feeling like your whole world had just dropped out the bottom. The thought of, ok, this is as low as we go. And HOW THE HELL DO WE CLIMB BACK UP. It's at that very bottom that you just think: a) whoever said that we are not given more than we can handle is FULL OF SHIT b) how are we EVER going to get past this. There may even be some element of what the hell did I do or who did I piss off? Why?
Some people call us strong, some people call us inspiring. There are so many beautiful things about all of this, and I'm glad our story is touching people and inspiring people and that I can convey some of the great things about this miserable sentence. That said, to be totally frank here, this sucks. And there are just some days where we don't feel positive or inspiring and where it's tough to keep up the fight.
Somedays you just get caught up in a feeling sorry for yourself cycle where you are stuck in the middle of this battle, and GREAT you are inspiring people but you wish you didn't have to tell, or live, a story such as this. You look around social media and you see people with supposed "perfect" lives, and wonder, why us? Why were we picked to deal with this? You wonder if things will ever be "normal" again, only to realize your normal is totally rocked and nothing will be "normal" again. And quite frankly, you just want to scream at the top of your lungs, fuck this shit! Over and over and over. Resembling a bit of a toddler meltdown.
Some days are truly just feeling at the bottom. And that is about as real as it gets.
I don't say that to get sympathy or to get words of accolades in how well we are doing. I do this to convey that this is real, this is raw, and some days just flat out blow. This is hard, we wonder why us, and we wonder how we are going to find the resolve to keep going on the never ending roller coaster.
This is also real life. This is about as real as it gets. And there are SO many positives we can find throughout it. What I can say that always occurs to me at the bottom and what occurred that night with Bailey: he is still with us. He's still finding his way in life, but he's an extraordinary young man. At the other side of the bottom is ALWAYS the top, so even on those days right now, we know we'll find the peak again.
Yesterday started out on such a high note. We were up super early for day 8 of treatment at SCCA. Colleen and Oliver headed over at about 6am to get there to have blood drawn prior to meeting with the doctor. Justin and I followed after dropping off the little kids at Miss Collette's house. Oliver slept pretty good, and was feeling pretty decent as we discovered the perfect cocktail to keep his nausea at bay with the THC and some Ativan. Sitting in the waiting room after blood, waiting for the doctor.
Justin met up with one of his kids in front of SCCA to get some bike wheels. Who comes in to a cancer center with bike wheels? Ding ding ding! Only looked SLIGHTLY out of place....
Justin and I made it upstairs and Colleen had given Justin the gift of knowing exactly what that silly pad machine dispenses. SPOILER ALERT: despite his confusion on the picture, it's not a sponge. Oliver just shakes his head at the three of us.... basically all day. We like to think we are at least keeping him entertained. Ha! At one point we were talking about us all being at our house and Oliver quips "it's like a foster home for overgrown children." And at another point, after the three of us yahoos doing something else, Oliver said something like "family of smart assess." To which Justin and Colleen AT THE SAME TIME, shot right back "better than a family of dumb assess!" Luckily, we still have a lot of fun throughout all of this.
We got in to the doctor, and first up a weigh in. First positive of the day: Oliver weighed in at 142 pounds. 142!!! This is ONE POUND OVER his starting weight even prior to treatment AND he had not even eaten yesterday am. We were high fiving all around. Thank you sweet weed for making Oliver eat.
Waiting on the doctor to meet with us.
The doctor came in and went over his labs, which he was VERY pleased about. His white counts are up (but will likely start to decline rapidly again this next week), and every thing else looked good as well. It was great news and a boost of confidence all around. The only real "bad" news out of all of this was that we (IE: Justin) have to give Oliver shots in the stomach the next 5 days to keep his white blood cell counts higher. It's either shots or hospital.... so when put like that, we were all on board with the shots.
After meeting with the doctor, we headed upstairs for chemo infusions. He only had one drug today (day 8), and so was given the "short timer" room. We kept asking him how he was feeling and he kept saying, with all the drugs y'all are giving me, I feel goooood. Hilarious.
Meanwhile the little boys were playing like mad at Miss Collette's! Still one of their absolute favorite places.
Justin and I stopped by my office to drop off some bracelets and to pick up a couple of things, and then headed home to meet Colleen and Oliver. We were grateful for a non-eight hour day of chemo. 3 hours at the center was MUCH more tolerable than 10. Once we got home, we were dealing with trying to get the growth hormone shots for Oliver. Pain in the ass dealing with the pharmacy, insurance, etc. At first it was an exorbitant co-pay. Then thanks to our wonky medical system if you do x, y, and z (but have to somehow figure out you have to do x, y, and z), then they waive the co-pay and will overnight to you without issue. It's such a screwed up process!
Oliver was definitely feeling woozy and out of it after chemo today. Hard to say if it was the chemo, or the mixture of drugs, more Ativan, or what.
He crashed hard while I worked, and Justin and Colleen went to get the kids and to make a quick Costco run.
B-nut was pretty tired on the way down to Issaquah. This is about 2 minutes in to the drive. Ha!
Colleen went to fax something for the shots, and after that a couple more errands before heading in to the bike shop quickly... where Bennett proceeded to puke his guts out all over the floor, and bathroom, and himself. YIKES. After this, I would have vetoed the hell out of Costco if it was me, but Justin is much braver than I am. So, off to Costco they went. Owen and Colleen went shopping one way, and Justin and B went off another way....and Bennett proceeded to puke twice more all over Costco. Sloppy, as Justin said. LOVELY. Headed home with barf bag!
Owen was happy, anyway!
Once home, Bennett puked again in the car, and then at home on the couch.... we aren't sure if maybe it's the same little bug that Owen had last week. It's been almost 5-6 days, so it seems like a long time apart, but anything is possible. Could also be something he ate. WHO KNOWS WITH KIDS. They are barf machines sometimes.
Either way, I went out to the gym for an hour as I just felt unsettled and frazzled by the whole med situation, Bennett, etc. Sometimes, it all just seems like... a lot. I come back in after an hour to Oliver having a 100.6 degree fever and climbing fast. ARE YOU KIDDING ME? And this is the point where I think, ok, what next? 10 minutes later: 101.2. OK, off we go to the ER. It was determined that I would stay with barf boy and barf boy's brother, and Justin and Colleen would take Oliver. One to drive and one to sit next to him in the car. He also was feeling like puking his guts out, sweating profusely and just felt like absolute ass.
Luckily on the way, as they were headed to UW Seattle, they got a call from SCCA who said it was fine to go to the ER in Issaquah, which is MUCH EASIER and much better than being in the inner city ER where we would have waited for hours. By the time they got there, his temperature was already down to 99.7. SUPER WEIRD.
Of course, due to cancer/his treatment they had to run a battery of tests: chest x-ray, all kinds of scans for infection, blood tests, etc etc. Gah!
A few hours later, after everything, they found out that his counts were actually ok enough to release him so that we could just monitor him at home. YES! His fever was vacillating, but it wasn't enough to keep him in the hospital. We were all shocked as we were bracing for at least a 48 hour hospital stay (typical for cancer patients with fever), or at LEAST more than 3-4 hours. On the way home, Oliver was talking about food and what he wanted so I was in charge of warming up some soup!
Also, somehow they escaped with sign in tow to settle the debate once and for all...
More #oliverstrong coming our way! On days where things just seem to be all over the place and not super awesome, getting these pictures boosts everyone up.
#oliverstrong himself. He has his dads hands. Fighting hands. And the roller coaster of a fight continues. We know there will be bad days, not so great days, good days, and awesome days. Today was tough because we were not quite expecting some of the challenges that came our way. We thought we were through some of the worst this round. But, as we are learning, we can't really set our expectations because they are bound to change. Luckily, at the end of the day, we always have each other, and with each other, we move onward. #oliverstrong.
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