Well, I am days late in posting because I have felt that horrible! More about that in upcoming posts. For now, I want to focus on June 15, 2022, which was the day that my stem cells were returned to me. I’m going to TL; DR this, right here and just tell you that there wasn’t cake and the whole process took my anxiety to a new level, but it is done and I am slowly but surely on the mend.

OK, let’s not forget, that I finished off Round 4 of chemo on June 14, at at approximately 2:00cst. On June 15, my group of three and our fabulous caregivers loaded into the van and headed to the Hematology Clinic. Ana had explained to me the actual process of what was going to happen, as she and Dick would not be there while the procedure happened. I seem to cope better when I know what will be happening vs taking a step into the unknown! At approximately 11:30cst, a small bag of stem cells started their journey back into my body.

I immediately started to flush and started feeling a bit nauseous. This whole nausea thing has been a recurring theme for me throughout this process and I don’t like it one bit! I did let the doctor know that I was really flushing. He said that it was OK, so in my mind, I guess that I should have just checked that off of my worry list. The whole process took about 20 minutes. We then went downstairs and were given a t-shirt and got to take a group picture in the ‘My Stem Cell Birthday’ frame and individually with The Legend. Seriously, the whole time I was doing everything I could to not get sick. I was still pretty flushed.

We got back back in the van and headed home. Once we got back to the building, I really couldn’t get out of the van and back to our room fast enough. Cue the dry heaving! Yaay! The dry heaving could be from the chemo and it could be from my anxiety from this whole procedure. I’m going to go out on a limb and say that it was most likely both.

I want to make it clear that I have not sugar coated this whole experience. That won’t help me and it certainly won’t help someone that is trying to make a decision about having HSCT done. I’ve read countless blogs and viewed vlogs regarding the HSCT experience. Those experiences are not mine. I am so thankful for the people that had no problems with chemo and were able to continue exercising through the entire 28 days. Honestly, for me, this has been the hardest thing that I have ever done! EVER! This has not been easy for me. The easiest time for me was during the testing. Once we hit Round 2 of chemo, on June 4, things went south and have pretty much stayed there. Does any of this mean that given a do over, I wouldn’t do this again? I absolutely would do this again. I just want to encourage people to do their own research. My goal here is to be brutally honest about my experience. My experience will not be your experience. Just like my MS is different from your MS.

Sorry for that little detour. So, we made it back to the room and I started in with the dry heaving. The flushing subsided and we headed to the roof for a bit. Here is where I believe that the magnitude of the last 17 days decided to come to a head. I get these panic attacks (I actually haven’t had them for years, but I’m about to make up for lost time.). I don’t know what panic attacks are like for anyone else, but the ones I get feel like I have forgotten something so important that the earth might stop spinning correctly and the entire planet is going to fall out of the solar system because I have forgotten X. The problem is that I just can’t remember exactly what X is. This ‘forgotten’ piece of earth shattering information can be triggered by a smell, a picture, a word. I never know exactly and I never know why it is happening. These attacks last for maybe one minute at the most. They are like a wave that I have to ride out and breathe through. Then they are gone. The big kicker is that if I have one, then I will have more in the period of a day. I guess that I’m just an all or nothing kind of girl! Well, on the roof, they started. I told Ana and I breathed through the first one. After about the third one in less than an hour, I decided that maybe we should head back to the apartment. I laid down for a bit and those stupid attacks actually woke me from a sleep! That has never happened before. They continued throughout the day, just randomly. Finally, by bedtime, Ana suggested a sleeping pill, which I actually gladly took, and I never really do that.

Neutropenia is the time where the white blood cell count drops dramatically. For clarification, our white blood cell count is typically between 4,000 and 12,000. During neutropenia, you can drop to the single digits. This means that you basically have no immune system! None! You have the immune system of a baby but actually less because you have nothing from your mother. The white blood cells are what are doing the attacking on the central nervous system with the MS. We need to wipe those suckers out so that they can be ‘reprogrammed’ with the transplant. After the combo of the chemo and then adding the stem cells back in, the next step is for the white blood cell count to start dropping. This starts to happen about 12-24 hours after the transplant. At that point, Dick, Ana and myself (and everyone else going through this) are sequestered to our apartments and are only able to leave to visit the roof for a maximum of 20 minutes a day. Dick and I are also not allowed to share a bedroom until the white blood cells return to a normal level. I will also have blood drawn every 48 hours and will meet with a doctor every 48 hours to make sure that the levels are dropping and that my red blood cells are staying where they should. If the red blood cells struggle then that could mean a blood transfusion. Ana said that 7 out of 10 patients need a transfusion. Let’s hope that this isn’t my case. Spoiler Alert – I didn’t need a transfusion so you can all take a breath!