So today is -5, which means I’m in the final countdown to transplant. Every day will count down negative from -5, -4, -3 and so on until I get to Day 0. On Day 0, I get my stem cells! This is such a big day! It is referred to as “your new birthday” because it’s the day your new immune system was born. This is now an immune system free of MS that doesn’t have memories of making an enemy out of my brain, spine, and optic nerves. Can’t tell you how excited I am for this! When I first started reading about this procedure, and started seeing people who had gone through it and hearing their success stories, I wanted it so bad, but it seemed like such a long shot! To be laying here right now in this hospital bed is actually a dream come true!
I had to be at the hospital this morning at 7:30 am, so we went down early and ate breakfast in the hotel lobby. It was kind of hard knowing that I wouldn’t be able to spend time with Olivia again for the next few weeks, so I tried to play with her as much as I could. Next, we walked over to the hospital and met Laurie so she could babysit Olivia. They hung out with us, until they came down to get me to take me to my room. It was not easy to say goodbye to that little girl. I’m going to miss her terribly. 😦
They took Liz and me up to the 16th floor where my room is and I found out I’m staying in room 1698. It’s quite a bit bigger than the room I had a few weeks ago, and it’s really nice. Liz brought lots of pictures to hang on the wall, so it felt more like home. I have a wall to give me motivation that has racing pictures on it, and also walls that are just fun and family things. I’m glad I have a sentimental wife who thinks about these things and knows how to brighten my day! The downside of the room is that I got into the hallway that doesn’t overlook the lake, which is kind of a bummer, because the lake view from up here is really pretty, but I can still see it if I walk the hallways.
Next, Dr. Burt came by with a bunch of his nurses just to say hi and to see if we were checking in okay. We also got acquainted with the floor nurse. Then one of Dr Burt’s nurses, Kaitlyn, came by and gave us a lot more information about the next two to three weeks. Today is Day -5, which I have already explained, and I’ll be doing chemo today through Day -2. Also, I’ll be doing some crazy rabbit steroid called rATG . On Day -1, I’m off chemo, but I still take the rATG.
I’m on a bunch of other drugs right now to protect my stomach, because the chemo is really dangerous for the stomach if it doesn’t all get drained out. I’m also taking some anti-nausea meds, diuretics, and stuff that helps me sleep. I’m also taking stuff that helps me with headaches. I know I’m missing a bunch of them because I can’t think of them all!
Anyway, I was told I would start my IV at 2:00 pm, and then pre-chemo drugs at 3:30 pm. They said they would officially start chemo at 4:00 pm. At first they told me I wasn’t going to have to have a catheter placed to help me pee, but a while after the nurse left, she came back and broke the news to me that they wanted me to have one, because they don’t want any chance of the chemotherapy in my bladder. It can really destroy your bladder and be a high risk for cancer later. So after a painful, humbling experience, I now have a tube sticking out of the bottom of my
pen…um pant leg and an awful pee bag that follows me around everywhere I go! It isn’t comfortable I’ll tell you that. They gave me a drug to help with the catheter, so it wouldn’t irritate me so much, and it literally turns my pee orange. The craziest thing! I’ll spare you guys the pictures. 🙂
During this time, Liz left for a while to go get me a better pillow and blanket, and a few other things so I’d be more comfortable. She was able to go check on Olivia as well, but Laurie was doing such a good job babysitting, that Olivia hardly noticed that Liz even dropped by! Then Liz came back over to the hospital, while I was getting all my medication, blood work, and IV stuff in. I can’t remember which drug it was, but one of the medications hit me hard for about ten seconds, where I felt like needles were stabbing my skin everywhere. It was the darndest thing! And I think the Benadryl made me really tired, because I could barely stay awake to the time they were to put the chemo in. Liz headed back to the hotel, and I only lasted a couple of minutes after they hooked me up to the chemo, before I fell asleep. By the time I woke up, I only had about 25 minutes left of it. I’m going to say that went pretty well! I felt pretty good for the rest of the night, except my appetite is going way down (thank goodness!)
It seems like someone is coming in the room at least every thirty minutes to an hour to check on me to see how I’m feeling and to also make sure I don’t need nausea drugs. I was pretty wired after my nap, because the steroids were a good stimulant, so I was up until about 4 AM. That gave me a good excuse to make sure my X-box was working well 🙂 ,which fortunately it does! It’s nice because the TV is a Samsung Smart TV flat screen, and I can hook up my blue tooth to it, along with my phone. I have so many movies on my phone that I could project to the screen of the TV. This means I now have Dish Network and TIVO in my room. Through the Xbox One, I have Amazon Prime, Netflix, and HBO GO. So, as far as entertainment is concerned, I am set up! Plus, I have tons of audio books I still haven’t listened to. Also, my phone Internet is running about 60 MBPS of unlimited data (that is pretty fast!) I’m really hoping all of this helps me stay sane while I’m here, because I’m not used to being stuck inside all day for such a long duration.
On another note, they mentioned that if my blood counts get up fast enough, I might be able to get out of here for five days faster than we expected. They’ve already expedited my schedule where we’ve knocked a week off it, which is really nice, because I’ve already run out of annual and sick leave at work. I’m on borrowed time now and just hoping I have enough to keep the paychecks coming! So far we’ve been extremely blessed with everybody helping us out. I know we’re going to make it and I know the sacrifice is going to be well worth. I also know everyone that has helped us out will also be blessed. I have no doubts. Cheers to good health and strength!
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