Wow, things just kept getting rougher for me as the injections went on. The Sunday afternoon we left for Duke I just couldn't believe how awful I felt. I was bummed that I had to skip church that morning, but knew if I even tried to go I wouldn't make it past the parking lot. Luckily, I had my mom to drive me up to Duke and be with me. (I seriously don't know how anyone could do this procedure by themselves...it really is important to have someone with you to help you out. My mom was just as big a part of this experience as anyone else involved. Much love to you, Mama Crawford!) She loaded our bags into the car, took the directions from me, and we were off. I was miserable. Thank God for reclining car seats. And good shocks. Every time I moved I ached. Every bump in the road sent sharp pains into my spine. I was really feeling it at this point.
We got to the hotel (all paid for and set up by the staff at Duke, of course) and we really got some star treatment. I
I have never been so happy to lay on a hotel bed in my life. Every time I stood up, it felt like my spine was being stretched all the way out of the top of my skull. Directly next to the hotel was a restaurant, so mom headed over there to pick up some carryout food and brought it back to the room. I didn't eat much...probably a combination of feeling so awful, and also a lot of anxiety.
So many things were swirling around in my head...wondering how "Jack" was holding up, hoping I didn't need a central line put in tomorrow, praying everything would go smoothly, worrying about how mom would do tomorrow (she is a trooper, but like every mom, she hates to see her children in pain), praying for the doctors and nurses involved in the transplant. My brain just couldn't turn off.
I was in so much pain, and filled with so much anxiety. I knew I needed to do something to ease both my body and my mind. My mom drew a hot bath in the hotel bathroom, which sounded like the best idea ever to me. I lowered myself into the tub, and the hot water and weightless feeling was such a relief.
So often, when I'm in my shower at home, that is when I do my best thinking, my best brainstorming, and where I get inspiration for my writing. I guess this was no exception, and as I laid in the tub, I knew I needed to write to get all these worries, doubts, excitement, etc. out of my head and released. I called for mom to bring me some paper and a pen, and I got to it. Nothing like writing to wring all those thoughts out of your brain and onto a paper.
Here is what I wrote. Certainly not a Pulitzer Prize winning piece, but I think it really reflects how I was feeling at that moment. I haven't edited it or anything...maybe someday I will do more work on it, but for now it is still raw. (You can click on the pic to see it larger.)
The bath helped immensely. I stayed in for at least an hour, if not longer. Then managed to climb out and get myself all tucked into the bed. Tomorrow was it...tomorrow was the big day. The end of all this for me. And the beginning of it all for "Jack".
We woke up and headed to the hospital early...I think we needed to be there by 7am. We were greeted by Susan, who I had met at my previous appointments at Duke, and Carolyn (sorry, not sure about this name...I'll explain why later). They were going to be handling my donation throughout the entire day...they were going to walk me start to finish through the entire procedure.
First, I had to get two more injection of filgrastim in my stomach to blast my stem cells out of my skeleton. Ugh. Joy joy.
Then, they started hooking me up to "the machine".
But of course, nothing is easy. And they couldn't find a vein they could use. Ugh. Panic starts to set in. "Please God, please please please let them find a vein. I seriously do not want a central line put in. I don't want it. I'm scared of the pain. I'm scared of the risk. I don't want to spend tonight in a hospital bed. Please please please find a vein. Please. Pah---leeeeeze."
I got poked...a lot. A few different nurses tried, and they just couldn't get anything. More panic. More panic.
Finally, Susan came over and said she would give it a try, and ended up finding a wee little tiny vein that would work okay. She was able to get the needle in and get the blood pumping. Whoooo hoooo! We love you Susan! Then they went ahead and got the veins in my other arm prepped.
While we were getting all the lines of the machine prepped and hooked up to my arms, one of the nurses slipped and told me where "Jack" was from...turns out he is from Poland! Wow. So this guy isn't even local. They are going to have to take my stem cells, put them on a plane, and fly those suckers all the way across the Atlantic Ocean to Poland. Wow.
There were a few other patients in the ward. Some who were actually receiving their stem cell donations. I was really excited by this, and thought maybe during the day I could strike up a conversation with some of them once the procedure was under way. I would love to find out from their perspective about the recipient side of this experience. Unfortunately, that wasn't going to happen.
I remember Susan walking over to my hospital bed with a syringe. She opened up one of the ports on my IV and said "Here, this will help you with your anxiety." Hmmm, guess she could tell I was a little nervous, although I thought I was doing a pretty good job hiding it. I asked her what it was, and she told me it was Adderall. I had never had it before, but I figured it couldn't hurt to take the edge off.
Mostly, once that stuff got in my body, I really don't remember much of the details (which is why I can't remember if Carolyn is the right name...sorry). Which is probably a good thing. I ended up hooked to that machine for about 12 hours. But if you ask me, it really only felt like an hour or so. Those drugs worked reeeeaaaal nice.
My mom was so awesome. I remember a few fuzzy details about the day. I think we did a crossword puzzle together. And she brought me lunch from the cafe in the hospital. I was blissfully ignorant of how long we had been there, and of any pain or discomfort I was experiencing. Adderall, I'm a fan!
I don't even remember these pictures being taken...that is how out of it I was. (And seriously, don't laugh at how rugged I look...remember...I was feeling like a big old platter of poo.)
So yeah, I guess they thought it would be funny to give me an angel halo for the day. Not gonna lie...this is adorable (minus my totally grubby hair, makeup-less face, and flattering view of my triple chins.)
Center: This is the "harvesting" machine that does all the work. It sucked the blood out of one arm, then through a centrifuge process was able to extract the stem cells and separate them in their own bag. Then the machine returned my whole blood back to me in the other arm. There is a video below showing the whole thing.
Right: Yyyyeah. This stuff was inside me. The pink stuff on the right are the stem cells. The yellowish stuff on the left is plasma.
And here are the coolers that were packed with my stem cells to be taken over to Poland. Whoo hoo!
(I swear, the next time I am on a plane and I see a pink cooler, I will totally ask that person if they are transporting stem cells. It will probably just be Diet Cokes, but I'm still going to ask.)
Here is some video I took during the procedure. Yikes. I have ZERO recollection of this. You can tell I am super drugged up, so I apologize for the weird voice and spacey sentences.
And here is Susan giving us a little tour of how the process works.
So once we were finished with Day #1, they took me off the machines, and sent me back to the hotel to rest. I tell you, the second I got off those machines and started moving I felt miserable again. The filgrastim injections from that morning had finally hit me, and I was nauseated, achey, and throbbing all over again.
So we went back to the hotel that night, ready to repeat the process all over again the next morning. Except we ended up not needing to! We got a call from the hospital saying the donation went SO remarkably well that they had more than enough stem cells, and I wouldn't need to come in for a second session. Amazing! They said they ended up with so many stem cells they probably wouldn't even use them all for "Jack" the first go around, and that he could freeze them and use them again in the future if he needed them.
Honestly, I wasn't surprised by this. The way that filgrastim was working my body, I just knew deep down it was doing a really good job. I was overjoyed!
The next morning, mom and I hit the road again, back to Wilmington. Back to normalcy. Back to mornings without injections. Back to my body just working for me, and no one else. Back to every day life. This was the end for me. The end of the pain. The end of the excitement. The end of my part in trying to save someone. My job was over.
But this was just the beginning for "Jack". This marked his future. This was the beginning of hope. And fear. And every thing in between.
Because "Jack" lives in Poland, I won't be granted communication privileges with him. Different countries have different rules,and Poland is a closed communication country. This was disappointing to hear. I so desperately want to know what happened. Did the transplant work? Is he doing well? Is he back to living a full life?
But there is the awful possibility of failure as well. I have tried not to focus on this too much. But it nags at the human in you, no matter how much you try to shake it off. What if he died? What if? What if?
And again, I have to continue to remind myself...this wasn't about guarantees. This wasn't about a sure thing. This was about hoping. And trying. And doing something for someone who was in need. Period.
I cannot stress to you all how rewarding an opportunity this was. How for a period in my life I knew I was giving a gift that no one could match. Because I was a match. In a directory filled with possible donors, I was a match for a stranger halfway across the world. I was his chance. I was his hope.
For such little effort, you can do so much to change a person's life. Please go onto the National Marrow Donor Program's website and register to be a donor. It only takes a few minutes, but it could change a life. Be a match. Be someone's hope.
If you have any questions about any aspect of this at all, please feel free to contact me at andybrame@yahoo.com or you can leave comments below. Thank you for reading. Thank you for following along. And thank you for caring.
- Andy
And here is Susan giving us a little tour of how the process works.
Throughout the whole process, the hospital staff kept telling me it was almost a guarantee I would have to return for a second day of donation. Based on "Jack's" size and my size, they just kind of new it would take two sessions to get all the stem cells they needed.
So once we were finished with Day #1, they took me off the machines, and sent me back to the hotel to rest. I tell you, the second I got off those machines and started moving I felt miserable again. The filgrastim injections from that morning had finally hit me, and I was nauseated, achey, and throbbing all over again.
So we went back to the hotel that night, ready to repeat the process all over again the next morning. Except we ended up not needing to! We got a call from the hospital saying the donation went SO remarkably well that they had more than enough stem cells, and I wouldn't need to come in for a second session. Amazing! They said they ended up with so many stem cells they probably wouldn't even use them all for "Jack" the first go around, and that he could freeze them and use them again in the future if he needed them.
Honestly, I wasn't surprised by this. The way that filgrastim was working my body, I just knew deep down it was doing a really good job. I was overjoyed!
The next morning, mom and I hit the road again, back to Wilmington. Back to normalcy. Back to mornings without injections. Back to my body just working for me, and no one else. Back to every day life. This was the end for me. The end of the pain. The end of the excitement. The end of my part in trying to save someone. My job was over.
But this was just the beginning for "Jack". This marked his future. This was the beginning of hope. And fear. And every thing in between.
Because "Jack" lives in Poland, I won't be granted communication privileges with him. Different countries have different rules,and Poland is a closed communication country. This was disappointing to hear. I so desperately want to know what happened. Did the transplant work? Is he doing well? Is he back to living a full life?
But there is the awful possibility of failure as well. I have tried not to focus on this too much. But it nags at the human in you, no matter how much you try to shake it off. What if he died? What if? What if?
And again, I have to continue to remind myself...this wasn't about guarantees. This wasn't about a sure thing. This was about hoping. And trying. And doing something for someone who was in need. Period.
I cannot stress to you all how rewarding an opportunity this was. How for a period in my life I knew I was giving a gift that no one could match. Because I was a match. In a directory filled with possible donors, I was a match for a stranger halfway across the world. I was his chance. I was his hope.
For such little effort, you can do so much to change a person's life. Please go onto the National Marrow Donor Program's website and register to be a donor. It only takes a few minutes, but it could change a life. Be a match. Be someone's hope.
If you have any questions about any aspect of this at all, please feel free to contact me at andybrame@yahoo.com or you can leave comments below. Thank you for reading. Thank you for following along. And thank you for caring.
- Andy
