Exactly one year ago today, I received my auto transplant. It doesn’t really seem like that long ago, and yet when I think about how much has happened since then; how many ups and downs–it feels like 10 years have gone by. I mean it totally fucking blows that it didn’t work. I can’t sugar coat it. I really really thought it was going to work–especially since it worked for my sister. So I’m pissed about that. But, I can’t say it was for nothing. For one thing, I may not be alive today without it, as I realize I’m on borrowed time at this point. For another, I’m really glad to have had the experience. I feel like I’m a stronger person–mentally and physically–because of that transplant. So although most people would be celebrating their milestone “new” birthday today, I’m celebrating in a different way. I’m celebrating each day that I get to spend with my family. Especially the fact that I don’t have to spend my birthday in the hospital for the first time in 2 years!!! Although it’s not until the 19th, Derek and I are going away tomorrow night to a spa resort nearby, just to actually do something for us. And to celebrate the fact that I’m at the very least, here right now, and feeling pretty good (for me)!
So speaking of that, I had chemo last week (the 27th I think it was), and it sucked ass. I felt HORRIBLE. I thought I was ok at first, but I was so wrong. Needed a blood transfusion and lots of fluids between then and my next scheduled chemo, which was originally scheduled for the 6th. Unfortunately, I found out that I have pancreatitis from the Gemzar chemo drug I’m on, and therefore was unable to get chemo last week. But let me tell ya–that extra week off, was AMAZING!!! I’ve gained 3 lbs, started working out again, and feel pretty much like my normal self! It’s crazy how something that is supposed to help you (chemo), is so incredibly toxic. I still have quite a lot of side effects that really do suck, but I’m learning to live with them as best I can. 1) pain in my stomach from the pancreatitis. It’s not constant, but when it hits, its super painful. 2) tinnitus/hearing loss. This part really fucking blows. Now I know how my vets feel! The ringing is so loud sometimes that I just can’t hear anything else around me. It only lasts for a few minutes, but it’s certainly enough time to give me a headache! 3) dizziness. I still get dizzy right when I first stand up, and I have to steady myself for a second. It’s slowly getting better, but very slowly. 4) constipation. I mean I’m pretty sure this doesn’t need a description at all. 5) insomnia. I can’t sleep without taking something to help me fall asleep, and even then, a full night’s sleep is never expected. so I’m pretty tired most of the time. 6) Shaky hands. Some days are better than others, and I find that on my days where I take my pain meds for my stomach, I don’t shake as much. But on the other days, I can barely hold a pen to write.
But now for some seriously good news! (and I really don’t want to jinx myself, which is why I made this the 3rd paragraph in..)-I got into a clinical trial! And get this! It’s at Seidman!!!!!!! When my onc told me, I was elated. At least I have options. That’s all I kept thinking. My lab work has been great. Have not needed any blood in over a week, and my white counts went up on their own, without the Nuelasta shot. My liver enzymes have been down as well. All of that being said, I have no chemo scheduled as of right now. Before starting the trial, I have to be free from chemo for at least 4 weeks, which if I’m being honest, makes me incredibly nervous. From the past, I’ve learned that 4 weeks is typically when my body likes to relapse. The plan as of now is a PET scan in 2 weeks. If the scan shows actual remission, then I will move forward with the transplant process, as that is still my best bet at a longer life span. However, if the scan does not show remission (which my onc believes will be the case since I’ve only had 2 rounds of chemo), then I will either start with the trial drugs or have more chemo before my next PET scan. So fingers crossed, peeps. I’m really praying (again I don’t want to jinx myself here), that the recent good news in our family–Derek’s new job, the clinical trial, my labs, etc. is FINALLY just the START of good things to come. But I don’t want to get my hopes up.
In other news, I have a new Fnephew, Graham Jefferson Balyeat! He joins my other recently added fnephew, Ozzie Charles Rempel! No doubt, they will be besties 🙂 I’ve also recently started a gang. Yes it’s true. It started out as a club because it only consisted of two people, but now we’ve added more, so we are officially a gang. RHOGC. (Real Housewives of Geauga County). Enrollment is open to all. The only requirement? You must drop absolutely everything once per week (for at least an hour) for girl time. Dinner, drinks, coffee, movie, whatever. And you don’t even have to be from Geauga County. But you do have to be fun. Leave your drama with your mama. Crazy? perhaps. But I didn’t choose the thug life. The thug life chose me.
I’ve still been working full time, and have continued to be full time wife and mom. While I’ve been feeling better, I’ve really been trying to create some lasting memories with both Mack and Derek. I know that when the time comes, I will be too sick to do anything. It’s really unfortunate that I can’t travel anywhere far, because more than anything, I would love to go to Disney World with my fam. But I’ll take reading books, playing board games, and watching Toy Story while playing with Woody and Buzz. I’ve also been talking to Mack a lot about the possibility that I will be gone for quite a while in Houston (possibly), and although he doesn’t understand death or heaven, I try to keep that as part of our normal conversation, so that it’s not something scary or new, and so that hopefully he feels comfortable asking questions. Right now, he thinks that if I get too sick, I will have to go to heaven, and he won’t be able to see me anymore. But he also tells me that he knows if he wants to see me, he just has to close his eyes and think of my face, and I’ll be right there with him. This thought makes me both happy and sad. But at least it’s an open topic of conversation.
Those of you blog readers from the area, have likely heard the story of the death of Aliza Sherman. Her daughter Jenn has really been supportive of my journey, and I can’t tell you how much I’ve appreciated her kind and inspirational words. On Tuesday the 24th, at 5 pm, there will be a rememberance walk in her honor. Please click on the link below for more details. This is a really great cause for some really great people. https://www.facebook.com/?_rdr#!/justiceforaliza?pnref=story
Thanks again for all the well wishes! Here’s to one year of ups and downs, and another year of life (33 to be exact)! Wishing for many many more.