Okay, so I’m actually writing this post at the end of Day 1, because by the end of Day 0, I was so overwhelmed and exhausted by the awesomeness and emotions of the day that I just did not have it in me to update this, but here goes!
DAY 0: As you can imagine, I woke up this day extremely excited for all that was about to take place. I didn’t get the best sleep the night before, because the nausea continued. I had to have the nurse come in and inject me with Zofran, so I could avoid getting too sick. When I was taking my shower for the day, I was feeling the nausea coming back on again, but fortunately enough time had gone by from my last injection that they were able to fix me right up again. I’m trying to keep my complaints to a minimum because I just feel so fortunate, but I am going to say this, “Chemo/rATG nausea SUCKS!!!”.
The first order of priorities for the day was that I made sure I had “Old Lucky” on. “Old Lucky” is a green shirt that has brought me extra fortune in my life. I have to admit I’m a little superstitious, but I was wearing the shirt when I proposed to my wife, when my daughter was born, and a few other times. I’m not going to get into it any more than that, but this shirt is sentimental, and what better day to bust out “Old Lucky” one more time!
Liz came over at 8:30 am and shortly after, Dr. Burt and his assistants came in to wish me luck and see if I was ready. At 10:00 am, the doctor that administers the stem cells showed up with my 15 million stem cells frozen in liquid nitrogen. After thawing them out, they were placed in the machine by Eric my nurse, and then pumped into me through the catheter my arm.
It was kind of a rush when they were going in, because there was a weird smell from the preservatives that they were kept in. It smelled like creamed corn! My vitals started doing weird things, just because of the small reactions to the preservatives. It’s nothing big, just stuff like hot flashes and increased heart rate for small moments of time. It was over before I knew it, but the excitement in the room was awesome! At exactly 10:07 am is when they officially began my stem cell transplant (for the note).
Kaitlyn, one of Dr. Burt’s nurse practitioners, stuck around a while afterward and answered all sorts of questions for Liz and me. She also let us know that she was going to be my main point of contact for the next year. She told us that pretty much any questions and dealings between home and Chicago would be going through her. This was great news, because she’s very easy to talk to. She is very down to earth. Any question that comes to mind she does a great job of answering it and seems to know her stuff.
It sounds like the next few days will still continue to be pretty hard as my blood counts and immune system drop. Nausea will continue, because I still have the rATG steroids in my system. Plus, I’ll be tapering down with other steroids and medications. Even though the stem cells are in, I’m still operating on my old immune system for a couple of days, before it totally drops. At that point, there’s a short time of extreme precaution while waiting for the new immune system to start to grow and for my blood counts to come back up. Also, I have to be extremely careful not to fall or cut myself because I could bleed to death. This is the time when I’m totally Neutropenic and my numbers are too low to count. During this time, I’ll most likely have to have blood transfusions, platelet transfusions, or transfusions of whatever I’m in need of.
I’ve noticed a tradition among the people who go through the HSCT transplant, is that people have clergy from the hospital or a church come in and bless their stem cells before they go back in. I am fortunate enough to have my brother-in-law in-law Leo living here near Chicago, who is a priesthood holder in our church. He had to work in the morning and was not able to be here before the transplant, but shortly after, he was able to arrive and give me and my stem cells a beautiful blessing of health and strength. This was definitely one of the highlights of my day!
Another highlight came when I found out that my daughter Olivia was in a nearby waiting room with my sister. My sister had been babysitting her while Liz was with me. The closest I’ve been to Olivia since I’ve been here, had been watching her on the roof of a parking garage from a long ways away, but now I had the opportunity to sneak across the hall into the other half of the building. (It is against the rules, but a rule I was willing to break the second I found out she was so close!) I still couldn’t break the rule of being in direct contact with her, but I was able to stare at her through the window of the door and watch her play. They brought her to the window where she could see me and we were able to talk through the glass. She started running around, skipping, and showing off for me all the little dances that she’s been learning since I’ve been in here. Maybe it was all the medications or just all the excitement of the day, but that got my emotions going like never before. But let’s be honest here, is there is a dad out there that that wouldnt have felt the same way? I would have never understood it, until I became a dad. That little girl gets to me. Olivia, Liz and our baby due in July are the biggest reasons I am determined to beat this disease. The idea of not being capable of providing for them is unacceptable to me and that is why I am here.
I have pictures of my bikes, races, my cycling team, triathlon buddies, job, family, and friends. I even have my mental Labrador Retriever, Barney all over my hospital walls. Every doctor, nurse, maid, and kitchen aid that walks in my door, and asks a question about the pictures, gets the run down. I don’t do it because I’m conceited, and think I’m an awesome racer, but I do it because these are the things I love so much about life. These are the things that drive me to get better and stay healthy. Yeah, some of it is because I’m confined to this room and I’m getting a little bored in here, but really, it’s the experience of a good quality of life, a healthy life. I have an amazing supportive family and also a second chance. These are the things worth fighting for.
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