Living Like a Ghost…

… while the world passes her by.

That’s a quote from a book called, “Marrow” by Elizabeth Lesser. My sister asked me to read it a while back and I’m just now getting to it. The book is about two sisters who are doing a bone marrow transplant. So this is probably a bad time to be reading it. But, what else have I got to do? Other than planning my sister’s bachelorette and my wedding.

Ah! Sounds so crazy that I’m planning my wedding. But, if you really know me, than you know that I’ve already planned everything out. So it’s actually not that much work for me.

I know I haven’t updated in so long. Honestly, writing everything down means confronting my thoughts. That’s a danger zone. However, here in the hospital, there’s nothing else to do. I’ve had a lot of time to think here. I hate that. But, here is what’s been going on.

Justin and I are engaged! I told him that I didn’t want to get married until I was in remission. I vainly want my own hair for my wedding. I went to a radiation consultation. When the radiation oncologist looked up my last scan, he told me that I was in remission and there was no sign of disease. My transplant oncologist hadn’t gone over the results with me yet, so it took me by surprise.

I wasn’t happy about it though. I always dreamed of the day that I would hear those words. When I finally did, I felt scared. Cancer is never gone. It will always be in my head, my thoughts. When I feel horrible or something hurts or I cough, I can trace it back to my disease. What about when I get sick now? Is it cancer? Is it back? When I feel so fatigued that I can’t get out of bed, is it cancer? Is it back? My fellow survivors tell me that this feeling will go away in a few years. I hope so.

Anyway, back to the good part. I found out I was in remission on a Thursday. Justin left work early on Friday to spend some time at a local jeweler. When he got home, I was playing on my phone. He said, “Can you put your phone down?” I really thought I was in trouble, like I did something wrong. But, he just got down on one knee and said, “You told me to wait until you were in remission.” He asked me to spend the rest of my life with him and I said, “Yes!” Of course, he would have been stuck with me even if he didn’t ask.

I spent most of February getting as much time as I could with him and the dogs at home. I knew getting a transplant meant a long hospital stay. I love my house. I love my pups. It hurts so much to be away from all of that and Justin for almost four months.

My transplant was originally scheduled for February 27. My doctor pushed it back a day because the team wanted to change what kind of high dose chemotherapy I was going to get before my transplant. For those who are wondering, I had to do the transplant despite being in remission because there could be some more tiny, active cells that can’t be seen on a PET scan. We want to make sure everything is gone for good. My transplant oncologist informed me that my heart was too weak to take the chemotherapy they originally wanted to use.

To make a long story short, I had my tri-fusion catheter placed and I started the transplant process with total body irradiation (TBI). I had 5 sessions over the first three days. I was on the radiation table for what felt like forever, but I think each session was only about 20-30 minutes. It made me so tired. I would just fall asleep while laying there on my side. They would tape my shoulder to the board behind me so I wouldn’t move when I fell asleep. They played Justin Timberlake at my request. I love his new album and you should too.

After the radiation, I had four days of high dose chemotherapy. Then, a day of rest. The next day, my sister went in to get her central line placed to get the stem cells from her blood stream. She had to give herself Neupogen injections for a week before the the transplant. It was to make her bone marrow make more white blood cells. She said she had never felt that kind of pain in your bones. Initially, they said she didn’t produce enough stem cells so they pushed the transplant back another day. That night that I was supposed to get the transplant, they called to tell her that they were mistaken and they actually did get the four million cells that she needed to make for the transplant.

We finally had the transplant on March 1. That’s an easy day to remember. The nurses even come in with morraccas (spell check?) and sing happy birthday to you. Since they’re basically resetting my entire immune system, it’s like I’m a newborn. This transplant went better than my first one. I didn’t vomit the whole time they were transfusing the cells. I did have nausea issues for a couple days afterwards before they were able to get the medications right to control it.

I feel like I’ve been in the hospital for so long. I think it’s been ten days… I really have lost track of everything. I thought today was Wednesday. I can’t believe the transplant was only a week ago. It feels like ages. I can feel my body breaking down. I’m 28 with the body of an 80 year old woman. I can barely make it across the hall to grab snacks from the visitor’s lounge. Every movement hurts, even as I type. I can’t even wear my engagement ring! Well, maybe I can now since I’m done with TBI. Justin got me a silicone ring to wear, but I miss my real ring.

I still have no appetite. I get weighed every morning and it just keeps getting lower and lower. I have cravings, but that doesn’t actually make me eat. My mouth has been so dry. I have to do these saliva substitutes so that my mouth won’t be as dry. All of these little things that we do every single day are so hard for me to do now.

I am on day +7 from the transplant. They say that +7 to +16 is your “basement period” where your immune system is basically zero. I feel so dead, literally living like a ghost. All of my energy is gone. It’s taken me an hour to get this far in my writing. That’s another reason why I don’t update as much anymore. My hands have a tremor, too.

This is what happens when you’re in remission. It never ends.

I wanted to write more, but I’m so tired. I’ll try to update more often since I have so much time on my hands. Prayers, good vibes, and any other positive energy much appreciated. Also, a big thank you to everyone who has come to see me so far. I know Emory is a trek for a lot of people. It makes the days go by faster.

I love you all so much.

~SL (future SP <3)

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