One of the tough things about blogging is that it’s done on a computer and when you work on a computer all day the last thing you want to do is get home and get on the computer even more. This is my way of apologizing for yet, another, long pause.
I was thinking about where to start and the obvious answer would be from where I left off. But then I realized I’ve done a shit ton since then and I didn’t want to overwhelm you with a novel so rather than write you a novel, I thought I’d just post a bunch of photos and walk through the past several weeks like a photo album.
My last update was on May 3rd; the first day of my post one-year appointments. It was a busy day but everything went well. The 2nd day was busy as well…
I first stopped by to see the dentist. My salivary glands still aren’t working to their greatest ability but the doctor took a look around and there isn’t anything to be concerned about. She even mentioned that certain medications can affect the salivary glands so as I get off my medications it will likely get better. I’m slated to see her again in 6 months.
After the dentist, I had my bone marrow biopsy. This was my 8th one. I think they’re getting easier and easier…or maybe they’re just giving me more sedation each time (which is totally fine and am in no way complaining). A bone marrow biopsy is literally the best way for them to tell if the transplant is working (it is) so I’m happy to have it done to give me the peace of mind that the transplant wasn’t for nothing.
Here I am waiting for the doctor to do the procedure (oxygen and monitors because I was being partially sedated — being partially sedated, if you haven’t had it before, is interesting — you are completely aware and for me, in the moment I can feel the pain of the procedure but then afterwords I can’t recall what it felt like — they give a concoction of a pain killer and a sedative which has a short amnestic effect).
After the procedure they immediately put on a large bandage (much much larger than the hole created) so that pressure to the area is constantly applied so that it doesn’t bleed. The green stuff is from the cleaning solution.
Here’s a photo of my hip with arrows pointing to the different scars from the procedures that I’ve had. I’ve had 8 but it’s hard for me to distinguish all 8.
The next day was another very busy day. First I saw the gynecologist. Here I am in the room waiting.
Oh, what’s that? Is it a transvaginal ultrasound machine behind me? Yes! Yes, it is. Luckily, I haven’t had to have this machine used on me since The Harvest: Round 2. As an FYI, I have been thinking about writing a post with more details about my vagina…which I understand sounds quite odd because I’m sure most folks don’t want to hear about this (I have had people tell me that I already share too much, so I thought that might be pushing it). But as I think more and more about it, this is really something that is affected during this whole process so then I thought that maybe I’d do a post but to view it you have to have a secret code or sign some sort of waiver or NDA or something so you don’t accidentally don’t read about it…let me see if this is something I can do/if WordPress has this sort of functionality.
After the gynecologist I went to clinic to check in with Dr. Hickstein and Dr. Parta. While in the waiting room, I ran into these two lovely ladies. Jen and Wendy, they are both GATA2 patients like me. In this photo Jen was 64 days post-transplant and Wendy was 180 days. I met both of them before their transplants and make an effort to see them each time I visit NIH. They’re both strong, inspirational women who I am so glad are part of my life.
(Jen, Wendy, Me)
The appointment with Dr. Hickstein and Dr. Parta went well. All my labs looked good and they finally told me to stop the tacrolimus! This was the greatest news of the day — I’ve been on a sub-therapetuic dose for a couple months now but the fact that I could finally stop was AMAZING. I’m now down to only two medications (3 pills) per day! On the left was what my morning dose used to look like, on the right is what my daily dose looks like now.
Right after I saw Dr. Hickstein and Dr. Parta, I saw the ophthalmologist. My eyes aren’t nearly as dry as they were before so everything was good there.
For all bone marrow transplant patients it is recommended you get all of the immunizations (the ones you received as a child) again. This is due to the loss of immunities due to GVHD and although you’d expect that I’d acquire all the immunities from my brother that’s not necessarily the case. So because of this I had to get some vaccines which included: diphtheria, tetanus, haemophilus influenzae type B, streptococcus pneumoniae, salk poliovirus and a few others.
My arms were super sore immediately afterwords and then I developed these bruises…
And then a few days later I broke out with a rash…
It did go away within a day but it freaked me out quite a bit. I literally thought I contracted small pox or something. Okay. Maybe not small pox…but definitely something.
Then a few weeks later my feet swelled up. I’m not suggesting they’re all related because my body does strange things every once in a while and I’m not sure if it’s related to transplant or not because I’m pretty sure weird things like this happened before I just can’t remember. Also, I have pretty much the worst pedicure job in this photo so please don’t judge.
After my immunizations I got my pelvis and my thighs MRI’ed. I learned from my mistakes (documented here) and wore socks and was dressed up in these sexy clothes (they used to allow you to wear your own clothes (if they didn’t have metal) but at least 9 months ago they started requiring that you wear a gown provided by them). I saved mine for when I have crafting projects like painting to wear. Seriously. I actually have two pairs now if you need to borrow one.
And then I was done! Like all done.
That evening dad and I went to have some dinner. We had Indian food. It was his first time!
The next day Dad and I were both flying home. Our flights departed Dulles Airport around 3pm so we killed some time by going to the Air and Space Museum that is right next to the airport. We saw lots of planes and even the Discovery Space Shuttle .
So yeah. That was my post-one year trip to NIH. I go back at the end of October/beginning of November for my 1.5 year post-transplant appointments and in the mean time I’ll continue to see my hematologist, dermatologist and gynecologist here at home.
The past several weeks have been good. Very busy. But good nonetheless.
My hair is (still) coming in nicely.
I’ve even had to get it trimmed a few times…look at all the hair!
Just kidding, I know it’s not that much but it was kind of a big step. I want to grow it long again, but then my hair had been getting kind of fluffy and my side burns were getting long and then I developed this rat tail thing in the back which was totally not sexy. I also had this wicked wave in the back that was driving me nuts so Jenny (my new hair stylist) trimmed it all up and it’s manageable now.
I’ll admit, having short hair is kind of fun. It doesn’t take me very long to shower and, if I wanted to, I can make it looks like this…mohawk or fro — I can wear many styles now.
(I’ve actually never left my house with one of these hair styles, I was just trying to show what can be done.)
During the middle of May, Jackie (my sister-in-law) had a surgery on her foot so my mom visited for several days to help out around the house and with the kids and to just visit so I spent the weekend at Shaun and Jackie’s house with her/the family. This is us having dinner together the night of Jackie’s surgery. We were all about to have dinner and Jackie had to have her foot elevated and she was resting on the couch so we brought dinner (and the table) to her so we could all eat together.
Then, a couple weeks ago I was talking with Tess and Claudia at work about how I wanted to learn how to make sushi and Claudia disclosed that she knew how to make it so last Friday I had Tess, Claudia and Mrin over and Claudia taught us how to make homemade sushi and it was FREAKING amazing. Here I am rolling my first roll…
And here we are…
(Tess, Claudia, Mrin, Me)
Then the next day (Saturday) I went mountain biking! This was something that has been on my bucket list for quite some time but stuff like life happens and then you put things off because it’s just not the right time. Not that now was the “right time” because really, if I would have hurt myself Dr. Parta probably would have been like, “What the hell were you thinking? Did you really think that was a good idea?” Then I’d be all like, “But I thought I was invincible since I have new bone marrow.” And then he’d be like, “Really? Do you know how bone marrow works?” I’m kidding. But seriously. There’s never really going to be the “right time” for anything because really what does that mean anyways and there will always be excuses so sometimes you just gotta do shit that you want to do. And sometimes you have to do shit you don’t want to do.
Did I tell you about how when Dr. Holland first told me about how I needed a bone marrow transplant? We were talking on the phone and one of my first reactions/responses was “But Dr. Holland, now isn’t really a good time.” I was considering how I was doing well at work, had just entered a new relationship, etc. His response has stuck with me ever since and is applicable to so many things; “Ashley, it’ll never be a good time.” And he was 100% correct. It would never be a good time but it had to be done.
So yeah, Mountain biking has been on my bucket list for quite some time now but I’ve never had anyone to go with/teach me but then my co-worker Darryl was organizing some people to go and I back handedly mentioned how I’ve always wanted to try and then he encouraged me to join (even though I was like, “Noooo, I don’t think I should.”).
We ended up doing between 9-12 miles (my GPS said 9, Darryl’s said 12). Please note that I did end up walking my bike quite a bit because apparently me, a mountain bike and any incline don’t really go together. But I am giving it another try tomorrow so we’ll see how that goes.
This was my heart rate…I could literally feel my heart about to burst out of my chest.
And this is us half way…
(Mick, Me, Chris, Darryl)
And this is me at the end…
I’ve also been doing other normal activities like attending BBQs and graduation parties, I’ve been on dates, babysat Jasper and Abigail, spent some time in SF, spent some time on my couch and probably a bazillion other things. Oh yeah! I have something else I did that I want to share with you but I’ll save that for next time (because I accidentally wrote you another novel). I will finish up with this though…life. It’s finally feeling “normal” again.