Today I checked into the hospital to complete the stem cell transplant. I feel relief that it is finally here, anxiety about the things that could go wrong (but likely won't), and gratitude to be in such good hands.
I have my own room, and that's awesome because three weeks can seem like a very long time...and it can pass very quickly. I am hoping for the latter.
Since I last wrote, I had some time off, most of August really, and started to feel normal again. I was fortunate to have the chance to take a little road trip out east and spend some time with some incredible and inspiring women.
Returning home was quite the whirlwind. We arrived home very early on Wednesday September 6, and jumped right in. Thursday we had a family meeting, which is where you bring your support team in (thankfully, mine is extensive and beautiful, and has a good sense of humour), and the program coordinator goes through the process with them, gives out the schedule and answers questions if there are any.
That day I also had an echocardiogram and blood work, which was just awful! I don't know if it was because I was tired from the trip, or if I hadn't had enough water the in the days prior but it took four attempts to draw blood. Four, totally ridiculous. Even when the phlebotomist got the vein, the blood just wouldn't come, my body I think, was just trying to exert some semblance of control in a situation where we have very little. I even went outside and stood on my head (literally) for a few minutes and that did't work. Eventually I gave in and let them use a vein in my hand, which I am reluctant to do because for some reason, it makes me very emotional. I don't really know what the connection is, but I find it fascinating.
Friday I was scheduled for surgery to have my pheresis catheter put in, which took some getting used to. A pheresis catheter is a tube that they insert into a vein in your chest, it has two tubes in it so they can draw blood and take blood at the same time, or, I suppose if and when needed, they can input multiple drugs at once.
They make an incision in the neck, and go through the jugular to find and feed the tube into a vein that empties out near the heart. (This is my understanding of what happened, however, I must say that I was not listening all that closely). The surgeon that was going over the process with me must have taken a mime class as a bird course in university because her physical movements were very specific and had an aggression to them that I was not comfortable with at all...."then we PULL the tube up" what she was illustrating with her hands felt more like the movements of a sailor hauling up an enormous anchor, and I just tuned it out. Perhaps she failed that mime class. The tube comes up over my collar bone, under the skin and exits, if you will at the top of my right breast, where there are two ends available to be connected to IVs and, thankfully, this can be used to draw blood as well...so, less poking. There is a photo below for those who are curious, if you are squeamish, please scroll past, (though there is no blood).
Initially, this was the part of the process that caused me the most anxiety. The idea of having something under my skin creeped me out to no end. I have had, my whole life, nightmares about things under my skin, so I was not looking forward to this part of the process. On occasion I found myself sobbing in the car driving down the 406, at the thought of it. The 406 has that effect on me...probably because it's familiar and uncomplicated so my brain goes off and does other things while we travel it. However, now that it is in, and I am over the fear of it, I am quite grateful for it. It really does move things along faster and, less poking (did I say that already?)!
It needs to be flushed everyday, something I did not think I was going to be able to handle, and would leave to "Not-At Home-Care" to handle. I say "Not-At-Home-Care" because what once was the CCAC, and now has no real identifiable name, only comes to you if you absolutely can't get to them, so "home care" takes place in a clinic, that is not at your home. So, I have been flushing it on my own for a couple of weeks now...fear defeated.
Monday was a long day of chemo, followed by large doses of the neupogen again, this time a double dose for 10 days. This is to stimulate the stems cells to overproduce, and once there are too many, they are forced out of the bones into the blood stream so they can be collected.
The collection, or "Harvest" as I like to refer to it, happened on September 21 and 22. The first day we were not as successful as I would have liked, they want to collect five million stem cells in total, and day one came in at a disappointing one point nine million. Day two however, was quite successful, and I believe I ended up with between eight and nine million. This is good news, because the more they have to give back to you, the faster they can get to work.
The process was pretty cool, I had to do nothing, or as little as possible...sitting still for two whole days is quite a challenge for me. They hook up the catheter lines, one to draw out, which feeds into a very high tech machine that can distinguish by size and shape, which cells are stem cells and collects them, and then that blood was fed back into my body with the other. They even warm the blood on the way back in, very considerate.
The big challenge of those days was peeing in the commode...it's very strange to sit in the middle of a room and try to pee...even though no one can see you, there is something quite vulnerable about it. Also, the chair was set so high that my feet didn't touch the ground...felt like a toddler potty training.
However the biggest challenge was dealing with my overachieving self. In our initial meeting I was told that I may not need to do both days for the Harvest....scheduling day two was "just in case" they didn't get enough on day one. So of course, I was counting on one day only. I was sad and disappointed that I had to come back for day two. Of course, now that I know how successful that second day was, thanks to a horrible drug that they gave me before I left that first day, I feel better about the whole thing. I suppose I have always been a little late to the party :)
I am sure there is more to share, and I will try to write each day that I am here, but for now, I am going to try to sleep...tomorrow is the first of two long days of chemo.