"Change is literally the only constant in all of science. Energy, matter, it's always changing -- morphing, merging, growing, dying. ... Change is constant. How we experience change, that's up to us. It can feel like death, or it can feel like a second chance at life. If we open our fingers, loosen our grips, go with it, it can feel like pure adrenaline. Like at any moment, we can have another chance at life. Like at any moment, we can be born all over again."
-from Grey's Anatomy
So I haven't updated much recently because until last week, nothing was completely firm. As of last week, it's final -- on July 31, I will be admitted and on August 6, I will receive my transplant. It'll be my re-birthday!
My hospital ended up working up and contacting a whopping ten out of my 35 donors. The first donor to respond and be worked up was who they were going to go with. Several donors responded. At first, a woman responded and we tentatively were scheduled for a July 25 admission date with a donation on either July 31 or August 1. But the downside was that this donor weighed substantially less than me, so for her to give the full 1.5 liters of marrow so she was going to have to give stem cells via the blood instead of bone marrow cells.
What's the difference here?
Well, if you get a true BMT from a harvest (which happens when a donor goes under general anesthesia and through one or a few sites, a hole is made in the pelvis or hip to withdraw bone marrow stem cells), there's less of a chance of GVHD. The slight downside is that engraftment (new cell growth from the donor's cells, which are the graft) is a little slower. The recovery is also a little bit more lengthy for the donor. BMT cells are stem cells, but they behave a little differently when they come from the marrow.
If you have a SCT (stem cell transplant), they come from the donor's blood. Depending on the hospital's protocol, the donor will give themselves shots for a few days (how many days can vary hospital to hospital). These shots stimulate the growth of stem cells and can cause a little discomfort for the donor that feels like pressure inside their bones. Then, through a process called aphresis, a donor's blood is drawn, the stem cells are filtered out, and the rest of the blood is returned to the donor. The recovery is pretty minimal. SCT cells (otherwise known as Peripheral Blood Stem Cells or PBSC) engraft a little faster than stem cells retrieved from marrow.
For me, my doctors really wanted that traditional BMT.
So even though we had a donor secured and potential dates, my team (unbeknownst to me) kept searching and working up other donors. They didn't tell me because they didn't want me to worry or be anxious, which actually was really great of them because they're totally right -- I would have obsessed, even knowing I already had a SCT donor if nothing else came through. But because I had 35 perfect matches, they were able to keep searching.
My new donor is a 27-year-old man from Germany who is O+. I will no longer be A+ like my mom, but my dad and brother are both O+. A lot of my heritage is FROM Germany though, so it's an interesting coincidence. I asked my nurse coordinator whether or not it mattered that I was getting a male's cells as opposed to a female's cells. If a woman has been pregnant, sometimes their marrow develops certain antibodies which make it difficult and then they may require a female donor, but since I haven't had kids, having a transfer from a man is exactly the same as if I had it from a woman.
As you can imagine, the past few weeks have been very challenging and full of anxiety. Dates kept changing, some of the early donors never responded, and for awhile, I still had my catheter in and had to keep up the care of that (which required a LOT of assistance from my mom), and then I had to get it out, which was uncomfortable. It wasn't painful, except for the numbing shots -- those hurt more than anything. (Why is it that the thing that's supposed to prevent pain hurts like hell?)
But I made the most of my time. I spent lots more time doing things -- like going to the movies -- with my family. We love going to the movies and, for me, it's the only time the anxiety truly shuts off and I can just experience something, cancer-free for a little while.
But the time flew by faster than I thought it would, and now, I'm fifteen days away from transplant and eight days away from being admitted. And suddenly there's just not enough time for anything.
I'm really still struggling with how my interactions with my dogs is going to be after the BMT. I'm going to follow it. But I'm so nervous that my bond with them is going to change for the worse because I can't play with them right away or let them sleep in my bed or give them kisses or go forehead to forehead with them like I do when I rub their ears. It makes me cry if I think about it too long.
And the biggest thing I'm struggling with is that moment before they plug the chemo in. That last moment of before.
There's no going back. My life will change forever. It will never be the same. I'm going to change in ways I can't anticipate or prepare for. It's still kind of a crap shoot -- I could go through this just fine. I could end up with horrible GVHD or VOD. Or I could -- and probably will -- end up somewhere in the middle. And I just pray every night that however this journey goes, I don't end up worse off than I am now. I have so many things in my life that I want to do, that cancer has gotten in the way of, and I want to THRIVE not just survive.
And in some ways, I'm just ready to start and see how this goes.
So I'm kind of nervous and anxious and ready and emotional and crabby and sometimes at peace and all these diametrically opposed things all at once, hence the title of this post.
So I'm just trying to prepare myself as best I can.
Yesterday, I went with my dad to the place he gets his hair cut to get my head shaved again, since my wonderful stylist is on maternity leave. My hair had grown about 3/4 of an inch.
Tomorrow, I go for my last appointment with my transplant doc and my nurse coordinator. Thursday, my mom and I are going shopping for all the last things I need and then having a last visit to the Olive Garden. Friday, I get to relax a bit. Saturday night, my family and I are going to Red Lobster for a last nice dinner with all of us. Then the packing nightmare will begin.
On the day of my admission (July 31), I have labs early, then a quick appointment with the nurse practitioner to give me the once over to admit me. Then I get my catheter placed -- for the SECOND time -- and then I go to the admitting lounge and wait to get admitted to a room upstairs in the adult BMT/acute leukemia floor. And through the Facebook support group. I've met someone who will be in the hospital around the same time I am, so hopefully we'll get to meet!
Hopefully, all goes smoothly this time around. I feel like karma owes it to me to get me admitted quickly after what happened the last time, with me getting my line and then NOT getting admitted because my donor fell through.
In case you are wondering about what some of my restrictions will be like and things I'm going to need to do are while I go through this, check out this link to my entry on what to expect.
In case you are wondering about what some of my restrictions will be like and things I'm going to need to do are while I go through this, check out this link to my entry on what to expect.
The next time you hear from me, it will be the first night in the hospital. I'll just be getting hydration then, I won't be getting chemo 'til the next day.
It's my goal to update every day, maybe every other day. But I hear from some of my friends that there are going to be days I don't even want to pick up my phone to text. For those days, I got a notebook to keep track of things so I can still write about them later on. I really want to provide a good, first-hand account for people going through this.
xoxo,
Heather
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