Getting to my round two of chemo was similar to a shit show. We were rescheduled TWICE. First time because my counts were just right on the edge and they wanted me a little stronger and the second time was because of the holiday the doctors that needed to see me wouldn't be in.. so you can imagine the dismay I felt. Rescheduling me being gone for 5 days is no easy task as it takes the whole damn village to be involved, so telling me plans changed at 5pm the night before I'm supposed to leave town does not make my life any easier!
We did however make it, arriving was simple; I just did a blood draw and met with the oncology team and shortly after that they had a room ready for me so I was admitted. Typically I would just stay for the 5 days of chemo but this time I stayed for 6 as we were testing out the Neupogen shot, yet again.
Colby stayed with me for the entirety of the first day but then I sent him home as he's much more needed there than just watching me lay in bed for 6 days.. But I did make him tend to my every need that first day. Plus my bff, Brooke, works at this hospital and lives down the street so she was there to tend to any extra needs I had.
The week was long, and hard on my body. Each day I would have a chemo treatment.. between premeds, chemo and fluids I was probably hooked up about 8-10 hours of the day. My blood pressure was pretty low the entire stay and I am sure I slept 90% of the time. The chemo made me very out it and foggy and a lot of the premeds made me sleepy. But honestly sleeping for a week is probably what I needed. Luckily I really didn't have any bad symptoms from the chemo while being there.. other than not being able to keep my eyes open.
That was until day 6 when we tried the Neupogen shot, this shot is given after chemo to help boost the white blood cells.. a shot a LOT of people get after treatment and ~no one~ ever has reactions to.. except for me. We took one dose and broke it into 1/100th, 1/10th, then the rest of the dose and the allergy team came to hang out with me while doing this "experiment". The first shot, no reaction after 45 minutes.. the second shot, no reaction after 1.5 hours.. the last shot (full concentration) full allergic reaction after 30 minutes. I got really bad tunnel vision, hard to breathe, nausea, shaking, sweating the whole thing. They ended up running fluids right away and giving me nausea meds then stabbing me in the thigh with an epi-pen and that's when I started to feel better. They said my blood pressure pretty much bottomed out so that's why I was having a lot of those symptoms. Luckily I lived through that for the 3rd time now and they were able to say "you're definitely allergic to that" like.. yeah no shit I told you guys that 3 weeks ago but thanks for making me suffer again. But now we're kind of stuck on what to do for a different kind of medication instead since this is a problem they've never dealt with before.. you know we have to be ~rare~ for everything. They are working on ideas and will hopefully figure out another option otherwise I'll just have to live in a bubble for the rest of this treatment.
Finally the day after I almost died I was sent free from hospital jail and Colby came to my rescue.
Since being home I am feeling much better, the first couple days back I was very weak, confused, tired.. obviously needed to rest but I was tired of resting! So I would get up here and there when I could find the strength. I have been home almost a week now and am feeling more myself every day.
The cancer, the chemo, the medications, the appointments, procedures.. all of it. It doesn't scare me. Yeah the blood grosses me out and I don't enjoy being stabbed with needles but the whole process doesn't scare me. I have no doubt we'll make it passed this and my body will tolerate everything else we have to do for this treatment regimen. Did I think I'd ever be standing in front of the mirror bald and hooked up to pumps? No. But scared isn't what Im feeling about this.
What Im feeling is anger, heartbreak, rage, sadness.. a little for me, a lot for my kids. Our time is already so limited and now I have to spend the little time I do get dealing with all my own health bullshit. When I'm not tied up in appointments and procedures I am home having to rest and recover and not be around people and worry to not get sick.. It's not fair. I already am loosing so much with them, so much time we're supposed to be spending making memories and having fun but instead this is what I have to do.
I had to miss 4th of July with them since I was admitted, everyone was worried about if I'd be able to see fireworks over the lake from my window.. I literally don't care. I don't care about the fireworks I care about seeing the fireworks through THEIR EYES, watching them have fun on the hot sweaty summer day. Doing something other than worrying about what appointment we have next or what nurse is coming to the house today. I'm mad about it.
I'll be fine after all this treatment but will they? Especially Ryder. He is surrounded by so many sick people I don't want him to think this is how life is supposed to be.
It makes me want to rage to know we are good people, we take care of our kids, we live good honest lives and have good intentions and THIS is the shit we get handed? I have seen so many bad people out in the world, ones that don't take care of their kids and just want to be a menace to society but they get to live normal healthy lives? What gives? Why do WE have to deal with all the life altering events. I'm sick of it. We're trying to not let the cancer or genetic diseases steal all of our joy but how do we do that when the things we have to do to fight it ruins all things that bring us joy?
We will figure it out and get through it but the hardest part isn't the cancer,. it's everything I'll be missing because of it.