"Together, they make one master of death."
-from Harry Potter and Deathly Hallows by J.K. Rowling
Before I start in on my regular entry, if you are looking to see how my sedated bone marrow biopsy went, scroll down. There's a whole section on it!
On May 30, after running errands and going to appointments with my mom, my dad came back home with a surprise for me from them. He had me close my eyes and put out my hands and inside a pretty little bag from my favorite jeweler, was a Deathly Hallows wrap ring.
If you're not familiar with the origins of the Deathly Hallows and what they mean, they're from Harry Potter. They include a wand (the straight line), an invisibility cloak (the triangle), and the resurrection stone to recall people from the grave (the circle). It's part of a story within the Harry Potter/Wizarding World realm.
Here's the story:
And my dad said to me, "You need these. And I thought since you were starting your second life, you needed the Hallows. You need the resurrection stone."
And that just broke me. I know my parents have been anxious about this, I know they're scared, but I didn't know just how scared. And so now I wear this ring every day and will wear it every day in the hospital and every day after. But it broke me to know how sad and scared my daddy is.
I have this enormous feeling of guilt -- what I'm about to go through isn't just about me. My immediate family and several of my close friends are in this with me and they are about to see me go through hell and it's going to be hell for them. Especially my immediate family -- my mom, my dad, my brothers. I feel so guilty that I'm putting them through this. And we have no idea what it's going to look like. I have some ideas from being in online support groups and closely following a good friend who had hers about six weeks ago. But there's no guarantee how it will go for me.
I'm starting to feel all the feels right now.
I have three Golden Retrievers, and having been laid up for the better portion of two years with this CML, trying to get it under control, they quickly because my whole world (and they were already most of my world). The idea of not being with them for a month-ish, is breaking me apart. And when I get home, they can't sleep in bed with me for awhile. Luckily, it will be summer and mostly, they love to find a fan to stretch out near at night. But early in the morning, after my brother takes them for their morning trip outside, Mira comes up in my bed and paws at my arm until I give her my hand and then she lays down, puts her paw in my hand, and goes to sleep, and she stays with me like that for an hour. And I love to kiss my girls and get kisses from them, and I won't be able to do anything like that for awhile.
Right now, I'm nine days away from admission. Only nine days left with my girls. Only nine days of snuggles and kisses and paw holding. Being away from the is going to be the hardest thing. I can call and talk to them -- and I will, I'm absolutely that kind of pet parent and I'm proud of it -- but it's not the same. It's mostly for them so they know I'm still around.
I'm starting to get intimidated about all the throwing up I'm going to be doing. No one likes throwing up, but I hate it. It's one of my least favorite medical problems and I'm just dreading it.
I'm also dreading mouth sores. I intend to eat ice or popsicles thirty minutes before my chemo, during, and thirty minutes after. And then I plan to brush my teeth like there's no tomorrow. I'm very sensitive to rinses and they make me very nauseous, so I'm going to try to get by without them. I'm going to brush my teeth after every meal, too. So I'll probably be brushing my teeth 3-4 times a day, maybe more.
I also realized how little privacy I'm going to have for the next few months. Someone's always going to be checking on me, I'm going to have to shower with the door open, just in case I need help or I start to feel sick. I'm going to need so much help for things. And I'm a really independent person that tends to push through, even when I shouldn't. My mom and dad already said they're going to be watching me like a hawk to make sure I don't overdo it or run myself ragged.
And time just seems so fleeting right now. Every day, it seems, there's something I have to do.
Today, I had my bone marrow biopsy. Tomorrow, I have a chest x-ray; a meeting with my social worker, Jack; meeting with my nurse coordinator, Isabel; and a final appointment with Dr. Pawarode. I may get a tour of the ward and see what a room looks like. Thursday, Skye has her follow up appointment with Dr. O at the Animal Cancer and Imaging center. Friday, I have to do my Durable Power of Attorney-Healthcare. That's intimidating the crap out of me. I have to take it to the bank so we can get witnesses to me signing it. Then, also on Friday, we have to go to the AT&T store and get new phones, because mine is slowly dying and I'm afraid it's going to go wonky while I'm in the hospital and suddenly be cut off from everyone on a day when no one's staying with me (someone will be staying with me most of the time, but I will have a few days alone).
This weekend, I have a fun thing to look forward to. We are going to see Dark Phoenix (the next X-Men movie), and a friend of our family, Sam, is coming to join us and I'm so excited because I haven't seen her since the holidays.
Monday and Tuesday will be packing days for me. We finally finished shopping and ordered everything today. Then on Wednesday, I go for the big chop -- I'm getting my head shaved by my hairstylist. I know they'll do it in the hospital, but I felt like that would be more traumatic and so impersonal. This way, it's with someone I trust, who knows what I'm going through. And my mom can hold my hand while I cry. Because I know I'm going to cry the whole time, no matter how practical this is. Then I get my mani-pedi on Thursday, and Friday morning I go to the hospital, I get blood work done, get admitted by Dr. Pawarode's nurse practitioner, and then I go into the main hospital to get my trifusion catheter put in. I'm a little freaked out about that, but I'll be sedated then, too. (I'm actually getting admitted to the adult BMT ward at Mott Children's Hospital, not the main hospital.) And then I'll get moved in.
I remember in April, when Isabel first called me to tell me there were 35 matches on the registry for me and I told her it felt like such a long time away and she told me time would fly -- she was totally, totally right.
So I'm trying to find peace where I can in the midst of all this. I'm reading more, which is giving me an escape. I'm playing on my Switch a lot. Last night I took a relaxing bath in our new tub. I'm letting myself eat whatever sounds good, because I'm going to enter a period where nothing does. Sunday morning we ran out to my favorite bakery, The Loony Baker, where they make the most amazing toasted coconut donuts (and the best donuts anywhere, in my opinion -- Dunkin just doesn't cut it). I'm just trying to savor as much as I can.
So, you want to know how my Bone Marrow Biopsy went?
The procedure went REALLY well.
My first Bone Marrow Biopsy was with my first oncologist who was okay, but really just not up on things. It was him and his assistant. My mom was holding my hands and rubbing ice on them to try and distract my brain from sensation in my hip. It only worked a little. I got some lidocaine, and then he dug into my hip and I still have a scar. It was like nails on a chalkboard inside my bones. Really sharp, horrible, achy awful pain.
Today was NOTHING like that.
First of all, when I got into the procedure room, two SWAT Team Nurses came in, Andy and Kristy, and they told me their sole purpose was to keep me comfortable. They weren't there to help with the procedure at all, they were there for me and only me. That made me feel so cared for, right from the start. They were able to get an IV going, which is impressive because my veins are SO bad from all the years of oral chemo, and they'd already been poked once for labs this morning (where they took 18 vials of blood from me, which is a record for me).
Then I met the tech who was creating slides and preserving the bone marrow in the proper way -- her name was Nancy. I always take it as a good sign when I'm having something medical and their name is Nancy. My grandma's name was Nancy and I was devastated when she died, but I know she's my guardian angel, and whenever I have a Nancy on my team, I feel like that's her little way of reaching out to me.
Anyhow, once they got me in position and the nurse practitioner doing the process arrived, the promised me they wouldn't start or do anything until I was comfortable, drowsy, and not caring about what was going on. And they kept their promise. I was anxious, so I required a little more Versed than usual. (Versed is meant to calm panic and anxiety. It's Xanax and Atavan's cousin.) Then they gave me enough Fentanyl to have me in and out of sleep. It took a little navigating because my IV wasn't dripping or taking a flush, so they had to readjust it. But then we were ready to go and Andy held my hand the whole time since I was anxious.
I did feel the shot of lidocaine and whatever local they used, but after that, all I really felt was a teeny bit of pressure. And it wasn't like other biopsies I've had (particularly liver biopsies) where they say it's a little bit of pressure and it turns out to feel like the Hulk is putting the pressure on you. It really was just a little pressure. And I kind of dozed in and out while they took both an aspirate -- the fluid in your marrow -- and a core of the bone and the marrow itself. I'm not sure how many cores they took. I wasn't focusing on that part.
So this procedure was just a complete 180 from my original biopsy. The moral of the story here, kids, is get sedation if you can. I am nervous about the results. We haven't seen my biopsy in six years and I don't know what kind of party cancer is throwing in there. My biggest worry is that they'll find that I'm at a different stage of CML. According to all my BCR-ABL PCR tests, I'm still just chronic. I don't know if they could find a different stage there, but that's what I'm nervous about. Because CML patients have the best outcomes with a BMT when they are still in the chronic phase, generally speaking.
So anyway, that's what I've been up to the past few days and what I'll be up to as we move forward. I'm super worried about a lot of things and I feel like time is just sand slipping through my fingers.
If I'm not at an appointment, I'll be reading, or napping, or snuggling with my dogs, and just soaking up what little time I have left with my family before my entire world changes.
xo,
Heather
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