Sunday, April 12, 2015
A tiny bit of an update
Sooooo, it's been a ridiculously long time since I last posted, but I can pull the cancer card now so shut up and leave me alone ;) A lot has transpired since my last post, so I'll try to do a quick overview.
First of all, the kiddos are doing great. Dax is in a CDC class and he transitions into a regular classroom for some of his academics and his specials. He likes going to school, and, other than picking up a few unwanted behaviors (sometimes it's good having a good imitator, sometimes it's not,) he's done really well. I'm constantly surprised at the sight words he knows. He's a smart little grasshopper if you pay close enough attention. Oh, and he turned SEVEN last week. SEVEN. I'm still wrapping my head around how fast the last few years have gone by.
Tyler is in a regular kindergarten classroom with pull out support. He's also a great imitator, which has fared well around his typical peers. Additionally, our ped (who's amazing, by the way,) tested both boys for celiac disease in the fall and, ding ding ding, Ty had red ink everywhere. We did an endoscopy in December to confirm, but he, at five, has a firm diagnosis of celiac disease now. I was devastated. I mean, that kid loves him some gluten. He has been gluten free as of January 1st, however, and, by God, his language has really taken off since then. He's speaking in some sentences now, and he's able to label boatloads of things I didn't know he knew. He's also taken off with completing tasks I didn't know he could do, so he has some chores around the house now and I'm completely amazed by what he knows. He even used "What the hell?" in a sentence appropriately the other day. I was so proud :)
As for me, my second round of chemo was successful, and I admitted to the hospital on January 13th for an allogenic stem cell transplant. They warn you that the transplants are somewhat difficult, which I shrugged off mostly because I AM MOLLIE AND I CAN DO ANYTHING but, oh my God, stem cell transplants are actually not super easy after all. I had a good bit of nausea following the chemo they gave me, which is some by-golly-for-real-knock-you-on-your-ass chemo, and about a week after the transplant (give or take some days; it all runs together now) I ended up in ICU for a few days because of a severe GI bleed that tried to kill me. Apparently that's not a common side effect, but my GI issues contributed and it was pretty ugly for a few days there. I put on 30 lbs in ICU, and subsequently lost 40 once I discharged back to oncology, and there was this awful rash and the nausea and the weakness..... It was the worst of times, it was the worst of times. I remember thinking it would never, ever get better... But it did. Slowly, it did. I finally discharged after about 40 days of hospitalization, and now suddenly (or not so suddenly) we're on Day 81 post-transplant. I'm still weaning off steroids for graft versus host disease, but the side effects of the steroids are slowly lessening. I can climb stairs now just using one hand for support. I drove my car today for the first time. I still ache; my leg muscles are atrophied from bed and steroids and they hurt almost constantly. I'm only now starting to grow the tiniest smidge of hair and it's almost been three months. When I asked the NP why it was taking so long to grow, she replied, "You know how you feel on the outside? That's how your body feels on the inside, too." I guess I'll give my head a little bit more leniency. I get tired a lot. I nap a lot. I sit a lot. I've watched Orange Is the New Black (OMG I love that show!) I go to the doctor a lot. My labs still aren't great so I'm still mostly isolated from the world, but I've learned how to hand crochet (thanks Yum Yum) and I've taken up Soda Crush (thanks, Ma,) so it hasn't totally been wasted time?
Oh, and this week I'll find out if my cancer is still gone or not. So there's that. Here's hoping all signs point to yes. My Magic 8 Ball never disappoints.
And I guess that's all for now? Sorry it took so long, but I had cancer ;)