So today was the day I have been waiting for, DAY ZERO!!! This is the day that my new stem cells were flooded back into my body to restart my new hopefully MS free immune system. The chemo is finishing off its job now and in about 2 days my numbers will have dropped low enough that I will be confined in isolation for around 8 days or so, give or take a couple. It really was a day full of emotion, just crazy. This blog will be heavily loaded with pictures, so fair warning in advance.
I woke up a bit earlier than normal, just couldn’t sleep. I wasn’t super nervous about the procedure itself, it’s just a whole lot to process and then the mind just doesn’t cooperate with the body and then sleep is a lost cause. I showered, ate some food and felt a lot better. Then it was just a lot of sit around and wait, and wait, and wait. I think the waiting is the worst part. Headed outside for a short period of time with a fellow HSCT buddy that was getting her stemmies inserted today as well. It was nice to just sit in the sun and relax and ponder how life will be like in future. For those battling MS or any AI disease life is so unpredictable, one relapse can take your future away from you, so knowing your life can be changed forever in a good way is just an amazing feeling. My bad relapse took most of my walking ability and ability to do much at all with my arms, it took months to regain the strength to be able to walk acceptably on my own and be able to even lift my baby again, and it is thoughts like that, that really put life in perspective for you, especially with kids, you want to be the mom that can be there for them, not a person they have to take care of. This whole process really makes you think a lot about the future and the past, and really gives you a whole new outlook on like, it is what you make of it, and dammit whether the treatment works or not, you gotta focus on what’s important and go for it, let nothing stop you ever.
But back to the treatment. So I got booted out of my room around 11:30 so they could get it all cleaned up nice, bed moved into the center of the room, oxygen mask brought, in, various other gadgets brought in to hook me up to, as well as all the supplies needed for the stem cell transplant itself. Dr. F recommended putting on a diaper, just in case, since after the stem cells get injected you have to down 3 bags of fluids, so I humored him and put on a diaper, didn’t use it, but there for just in case. Then the nurse demanded I hop up on the bed which was lined with a protected liner I guess in case of accidents, reminded me of the dog floor wetting pads. She had me get sorta laid down and then the shirt had to come off, always taking my clothes off around here, I swear…. Slapped 3 little monitors around my chest to monitor my heart, clamped on the arm band to monitor blood pressure periodically and then the finger clamp to monitor my pulse rate i guess. So I was laying in bed all hooked up ready to go for about 15 minutes before the craziness ensued. And then that’s when the fun started.
Dr. Nikolai was thawing out my bag of stem cells in a tub/bucket in the bathroom, said water is the best way to get them up to the right temperature. He showed off the bag to me all pretty and then soon they were all sucked up into 3 syringes. I collected all my stem cells in one day, so only had to endure one round of this, lucky me. At that time Anastasia came in the room and snagged my phone and started snapping some pics of the whole process, lighting was horrible because of the window, but still got pics and that’s all that matters.
Soon Dr. F was in and was holding onto my arm talking to me the whole time. They put on an oxygen mask to help with my breathing and then I was told it was starting. Dr. Nikolai started injecting the stem cells and Dr. F was wanting me to describe everything that I was feeling. Starting off it wasn’t bad, just a bit of odd pressure and then the overwhelming flavor of metallic tomatoes so many people talk about. Then the left side of my face felt a bit numb. Then my left chest started having a fair bit of pressure and breathing was a bit more difficult for a short period of time. They just kept saying take deep breaths it will all be over soon. Once it was over I felt like I had to puke, but just kinda dry heaved once and they pulled off my oxygen mask and I felt much better. Within a few minutes it was like nothing even happened, it was all injected and I never really felt any of it even going in. The doctors were all impressed, held up my empty bag to show me it was over, congratulated me and then were off to the next room to start with the next patient. I was then hooked up to 3 bottles of drips over the next 1 1/2 hours and just chilled in bed during that time, kept dozing off and on. Really was exhausting, but such an amazing experience. Afterwards the requirement is you have to pee in a bedpan in the bathroom so they can look at the urine color to make sure it looks correct, it passed.
I really wasn’t sure what to expect when it came down to get the stem cells reinfused, some people make it sound like the worst process ever, others say it’s nothing at all. One of the other ladies here, Ine said it best, it’s like childbirth, it’s different for everyone so it’s hard to describe, you just have to take it as it comes. While it wasn’t the most amazing 10 minutes of my life, it was over fast and I’m so glad that I had it done and would do it again in a heartbeat if needed.
Some pictures from my stemmie reinfusion. Don’t mind the bad lighting, Anastasia tried her best.
The experience for me was pretty draining physically. I was pretty wiped afterwards. I napped a bit off and on when my infusions were finishing up, but then headed into the lounge to hang out with the rest of the patients here. We were waiting for our Stem Cell Birthday Party to begin. Where Dr. Fedorenko hands out the Iris pins, does a little talk, explains the history of the procedure, his thoughts, hugs everyone, and then we get to throw the dry ice down the hallway that was holding our stem cell bags. Very exciting time. Some pics from that event, taken by my HSCT buddy Cathy who gets her stemmies back tomorrow.
There are some videos of the speech Dr. Fedorenko did as well as video of us throwing the liquid nitrogen down the hallway, but since they were recorded by a fellow patient, they are only viewable on facebook, so hopefully you can see them on my facebook page.
The Iris Pin represents new life free from MS. It’s the one thing everyone truly cherishes from their time here at the hospital. Souvenirs mean nothing, it’s the memories made here that are important. And we’ve all made lifelong friends here during out journey. The doctors here, Anastasia, the nurses, just everyone have made the experience so great. Yes there is a huge language barrier, but if given any other option, I’m so glad I opted to go to Russia, I truly feel it was the right choice for me.
So today was just an overall great day, it was the rebirth of my immune system, my new birthday, my new lease on life. Positive attitude means the most to recovery and I have that. I did this not just for myself, but especially for my little girls. So they can have a mom that can take care of them forever. I normally do discuss food and other things in my daily blog posts, but I think this blog is good right where it is, so I will end it here. I can discuss food in tomorrow’s blog.
It was a great day today, the day I can hopefully say I NO LONGER HAVE MULTIPLE SCLEROSIS!!!