What is “normal” anyways?

On April 8th of last year I distinctly remember sitting in my hospital room talking with Jennifer (my social worker) about life. She was always good at stopping by just to say “Hi”— to just check-in but then getting more out of you.

That day, my nephew was turning 7 years-old. I was disappointed and sad and angry that I wasn’t there to celebrate with him. I was at NIH and he was 2,500 miles away turning another year older and I wasn’t there. Celebrating his birthday was something I’d done almost every year since he was born (with the exception of when I was in Germany) and now. Now I couldn’t be there. It wasn’t even an option. Jennifer and I talked about this. We talked about the other events that I’d be missing out on – holidays, birthdays, yearly events that I’d grown to look forward to (can you say Bay2Breakers or SantaCon??). Friends would be going out. Posting photos. Having fun. Doing a bunch of stuff that I couldn’t do. I’ve never been one to experience FOMO (the “fear of missing out”) but I asked for her advice on how to deal with this anyways.

She reminded me to look at the big picture.

Yes, I wouldn’t be able to do a lot of things right now — I mean, I was after all having a life altering procedure done but once my body recovered I’d be able to participate in those things once again. She reminded me that this procedure, this time in the hospital was giving me the life to be there for future events that I might not have been there for otherwise. Now, I know I wasn’t on my death bed at the time of transplant. I didn’t even feel that sick. My blood indicated otherwise but in general I felt okay. I was exercising and working and living like any other person, but I truly believe that the NIH saved my life. There’s so many unknowns in life but statistically speaking with GATA2 I would have ended up with Leukemia at some point and likely by the time it would have been diagnosed it probably would have been “too late”. With all that said, Jennifer was right. I may not be at Jasper’s birthday or many other events this one year, but I’d be there for all of them the following years and looking at it that way allowed me to realize that it was okay to miss out just this once.

So this year, as I’ve been getting back to normal I’ve had several pivotal moments. I celebrated Jasper’s 8th birthday with him but my first pivotal moment came the night before May 15th. I was getting excited about going to Bay2Breakers (a massive SF event where people dress up in costumes and race from one side of the city to the other). I was babysitting Jasper and Abby. Jasper’s soccer season was in full swing and the next morning he had a game.

“TT?” (because that is what he calls me), “Are you spending the night and coming to my soccer game tomorrow?” My initial reaction was that of “DO YOU KNOW WHAT TOMORROW IS??!” and then I realized that this little boy that I adored so much had just invited me to his soccer game. Something that he is so incredibly proud of and he wanted to share it with me. I told him I would go realizing that it would mean I wouldn’t be going to Bay2Breakers. I went to the game the next day; not even regretting that I was missing Bay2Breakers for the second year in a row. I don’t even remember if they won or not but I learned something extremely important that day. That day, I was actively making the decision to not go. It was an option but being there for Jasper and actively making that decision was so important to me. I actively decided not to go but the option was mine. I think this is one of the most difficult things when you’re sick. It’s not your choice to get sick and everything just seems so unfair. I’ve thought about this so often and yes, while getting sick wasn’t my choice, having the transplant was. I actively chose to have it done. I chose to take control over my self and my body and go through with the procedure. It was in this interaction with Jasper that I realized so much of life is in your hands even when it might not feel like it.

My second pivotal moment was on  June 25th. Day +421.

I joined BloomReach in March of 2012 and BloomReachers quickly became some of my most favorite people. They’re smart and motivated and inspirational and athletic so I decided to organize a group of us to hike Half Dome. Growing up in the mountains has given me a perspective on nature and people that I think is pretty unique. There’s something truly special about sleeping outside, viewing the stars without the light of the city drowning them out, bonding with people over a campfire, hiking and just being outside and I wanted to share that with some of my favorite BloomReachers. It was such a fun event, that we did it again the next year. I was looking forward to doing it again last year but well, the whole transplant thing happened and I literally wasn’t physically able to do it (remember, I’d get winded just walking up a single flight of stairs). But! This year I decided nothing would stop me from getting BloomReachers on top of Half Dome again. We planned the trip and on June 25th I made it to the top. On Day +421 I hiked ~18 miles with 4 amazing people. For me, this day was the epitome of me getting back to “normal”.

Yue, Sunny, Riya and Seychelle were by my side the entire time and didn’t complain one bit when I need to take any of my many (many) breaks.

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Left: The obligatory selfie on top with Yosemite Valley in the background
Right: The obligatory “look at me” photo on the diving board (sorry, Mom…)






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.

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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).

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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.

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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.

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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.

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(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.

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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.

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My arms were super sore immediately afterwords and then I developed these bruises…

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And then a few days later I broke out with a rash…

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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.

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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 .

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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.

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(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…

sushi(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.Screen Shot 2016-06-20 at 10.33.17 PM

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.

Day +368

Today is Day +368. 368 days since I received my bone marrow transplant. 368 days since I received the cells from my brother that gave me a new beginning. 368 days. That’s a lot. When I look back, it’s amazing to think of how far I’ve come in the past year — my mom also agrees. I received this text from her on Sunday. =)

I arrived in Bethesda at 11pm last night after a short but weathery flight from New Orleans. I was in New Orleans for a bachelorette party; it’s a tough life I live sometimes and is why I didn’t post on Sunday but, ya, know. It’s good to reflect but it’s also great being in the moment. And I was being in some amazing moments with some amazing people.

I got to the hotel. Unpacked and prepped for today. My schedule was a bit crazy and looked a little something like this…


I headed to NIH around 6:45am (I was running a little behind) and got my blood drawn and provided a urine sample for them to complete the pregnancy test that was required before the DEXA scan. They insisted this must be done even though I guaranteed them I was not pregnant since I still haven’t had my period since last April. (And just for the record this part has been pretty great. I’m of the mind set that if I am infertile (which remember was like 95% chance), it would be pretty cruel of my body to still give me a period. I found tampons in my cabinet the other day and was like “Huh, I should probably get rid of these.” Then I figured I should keep them in case I had friends over that needed them one day. But I wasn’t sure if that was weird. I equated it to how I keep flour in my house even though I’ve been gluten free for 5 years but still. I didn’t throw them out. FYI —  lady friends, if you are ever at my house.) Anyways, here’s the blood. They didn’t take nearly as many tubes as I’ve had taken in the past (urine sample was omitted on purpose, you’re welcome).

After the lab I met my dad to say”Hello!”(remember he’s in town, too, for his yearly appointments). I haven’t seen him for a couple months so I was excited to get to see him here.

I then had my DEXA scan completed. This was the first time I had had this specific test done. The machine looked like this:

A DEXA scan is an x-ray that tells how dense your bones are. They took x-rays of my left wrist/hand, left pelvis area and left leg. Apparently they just do your non-dominant side since theoretically that side would be weaker. I won’t get the results until Thursday or so and the technician wouldn’t allow me to take photos of the scans but said I could get them from my doctor. Stay tuned for pictures of my bones!

I then had my ECHO (the machine pictured below was used). Nothing exciting to report here. I still have a functioning heart, which I heavily suspected. (Chip, if you are reading this, I missed you as my technician!)


I then did my pulmonary function test (PFT). This tests how well my lungs are working and unsurprisingly they are working better than they did back in October (I’m exercising more which is why this wasn’t a surprise)! Check out how sexy I look.

And yes, I took the nose pincher with me. I’m not sure why. I guarantee you I will never use it again. Maybe it’s like my logic with the tampons…?

After the PFT I saw the dermatologist. Here I am sporting my hospital gown. Like with my dermatologist back home they were looking for any irregular moles and further signs of GVHD of the skin. My skin has been pretty boring recently but I did have them confirm that I had a zit on my nose. For some reason, I haven’t had any acne since the transplant. I’m not complaining, just making an observation since I thought it was a little odd so when one spring up on my nose I was like “Huh, is that a…? Oh, it is! Weird.”

After the dermatologist, I saw Cindy and Dr. Holland. They presented me with this beautiful coloring to celebrate my 1 year anniversary. It was in a folder with notes from my doctors. It was such a beautiful and sweet gesture. I love my NIH family.


After the clinic appointment, I went back to the hotel, took a nap then met with my dad for a steak dinner. Tomorrow we are both getting our bone marrow biopsies done which means no eating after mid-night so I was trying to fill up as much as possible.

I’m actually pretty hungry again so I’ll be heading down to the hotel lobby to toast me some bread (gluten free of course) before I can’t eat any more for the evening.

“Cytogenetics normal” and increasing CD3 chimerisms!


I went back to NIH at the end of February to repeat the bone marrow biopsy that was “goofed up” last time. It was a good trip.

I flew out early Wednesday morning, had dinner with a friend, then had appointments all day Thursday then had dinner with another friend that evening, then had a few more appointments on Friday, then met with a couple more friends, had the evening off, then flew back home on Saturday. I’ve managed to accumulate a group of people I must see every time I’m out there so it makes the trips even more worth it. You know, on top of being able to see some of the best doctors in the world (not only by my standards but of the medical community as well).

While there my appointments consisted of seeing my transplant doctors, the dentist (it’s confirmed that my salivary glands still aren’t working well), the ophthalmologist (they said nothing was wrong with my eyes, I beg to differ but they said I’m just getting old) and my gynecologist. I also got a chance to chat with Jennifer (my social worker), Nicole (the research assistant that did all of my egg harvesting coordination), Cindy (one of my Nurse Case Managers), a GATA2 patient that I met last year who was 22 days post-transplant and then I was introduced to another GATA2 patient who was just a couple days from transplant. It has been so wonderful to meet other people like me and to relive my experience and to be able to give someone going through this an additional perspective. I wish I had that when I first started the whole process.

I got the preliminary results from Dr. Hickstein about 4 days later. He let me know that my CD3 chimerisms had increased from 56% to 65%. Remember how I’ve talked about my CD3 chimerism and how it was really lagging in respect to all my other chimerisms (chimerisms are the test to see how much of my cells are Shaun’s vs. mine)? Because they were lagging it was glad to hear that they are finally catching up.

About 3 weeks later, I received the best news of all. “Cytogenetics normal!”



It was in the cytogenetic testing that they identified the abnormalities of my bone marrow so checking this periodically is one of the best ways for the doctors to determine if the transplant worked and of there is anything to be concerned about.

A month after NIH, I went back to Stanford for more blood tests. They tested the chimerisms yet again and BOOM! It’s up to 75% now. Take a look! cd3.png

I head back to NIH in about a week to do my one year follow up. Holy. Shit. Right?!? It’s almost been one year. Unbelievable.

This visit they’ll do: blood work, a urine analysis, a DEXA scan (I honestly don’t know what this is quite yet as I’ve never had it done), a echocardiogram, a pulmonary function test, an MRI and a bone marrow biopsy. I’m also scheduled to see Dr. Hickstein, Dr. Parta, Dr. Holland, the dermatologist, dentist, ophthalmologist and gynecologist. And my dad will be there, too! It was just about time for him to go back for his yearly visit, so we scheduled our visits together. More to come soon!


I’m still here!

Holy moly! I just Googled the duration between November 16th and February 14th (since that was the last time I posted something and today) and it’s been 90 days. About 45 days ago I was drafting a post and it was about 4 pages long and I thought to myself that it’s got to be pretty damn good because I hadn’t posted in so long and then I spent so much time working on it that now it’s even longer and I’m still not done.

So to get you all up to speed on me over the past 3 months, I thought I’d send a small update (Hah! Small? Yeah, right.), then send out the other one that I’ve been working on in a few days. Sound good? Cool.

Here it goes.

Since November 16th, I’ve been doing really well. At that point I had just started work. Now I’ve been working for a little over 3 months. Starting out was a bit rough. I was working from 8am to 1pm every day. After the very first day, I got home and I immediately needed to nap. This happened for about a month. After that, I was tired but I could continue my day and do the things necessary to sustain myself. It quickly became clear that working part-time wasn’t only because I would get tired, but it was to ensure that I’d be able to continue to take care of myself. I still needed to cook. And clean. And rest. And relax. And working part-time allowed me to do these things. Starting about a month ago, I realized I was working full-time. It just kind of happened. You know how it goes, I’d plan on going home around 1pm, then something would come up and all the sudden it would be 6pm and I’d still be working.

It has been great being back though. Having a normal schedule has been the best thing for me, much better than I would have anticipated. Being around people has also been pretty great and having more human interactions than just my “hello’s” with the grocery store clerk have been welcomed. Also, with a consistent schedule I’ve incorporated exercise into my weekly routine. I even went for a 4 mile jog today. Now, it did take me over an hour, which many of you will recognize is actually the same pace as walking but I assure you, it was more work than just walking. I hope it’s obvious that I’m still not where I want to be but this is a huge step up from the last time I tried to run and after about 10 seconds I had to stop because everything hurt. Like I said. Huge step up.

Now, if you are one of my doctors, please stop reading now, and skip ahead three paragraphs. Thanks.

Against the advice from my doctors I adopted these two kittens at the beginning of November. On the left we have Olive. On the right we have Squid.

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Shortly after transplant I was going through a discharge training which discussed the things you should and shouldn’t do in the months to come. One of the things I wasn’t supposed to do was to get any pets. The main reason is that you are supposed to focus on yourself, not an animal, and oh, because they spread infection. Especially cats because you have to clean their litter boxes and what not. I had been considering adopting kittens for a long time. Like more than a year but didn’t do it because my schedule was so sporadic that I didn’t feel like I could take care of an animal in the capacity that it would require. But now, I had a set schedule (8am to 1pm) and I felt that since I was going to be working only part-time, now was the purrfect opportunity to adopt since I’d be able spend time with them instead of just adopting them and working all day long.

They’ve brought me so much joy over the past 3 months. They are great reminders that I just need to relax. On days that I’m tired. They’ll sit with me and sleep. On days that I start to work too late, I just think of them and they encourage me to come home because I know they are waiting for me.

Also in November, I started taking a pottery class. I wanted to sign up for something that would encourage me to get out. To not work. And pottery has done that for me. Here are a few of the things I’ve created so far.

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It’s been so rewarding going out. Working with my hands. And just creating. The original class was 5 weeks, then I signed up for another 5. And am considering doing another 5 weeks.

But how about my health you ask? Since November I’ve had a couple appointments with Dr. Meyer at Stanford to just check-in and also to have my chimerisms re-tested. As of my last post, the CD3 chimerism had increased from 29% to 52%. In December it decreased to 48% but then in January it increased to 56%. All good news as the general direction is increasing. My energy level is okay. My headaches are pretty much gone. I’m not sleeping as well as I’d like and I’m still getting hot flashes like a woman going through menopause but overall, I feel much better.

On Monday on saw my dermatologist. I see her every 4 months for my full body scan. This sounds a bit more bad ass than it actually is because this is just a time she has me change into a gown and then she inspects every mole on my body with a magnifying glass. There was a spot on my thigh that sprung up a couple weeks ago and had been bothering me and given my history we’re all super cautious of things that just appear so she removed the spot and biopsied it. I got the results today and it showed a benign lichenoid keratosis. This was good news. I really don’t want to end up with another scar on my body like the one on my back.

Oh! I also had my 30th birthday. My 29th birthday was spent at NIH and it was so wonderful to be with family and friends this year. It’s amazing how 1 year can change things!

So, I’m 30 now. Which is strange to say because I still feel like I’m 20-something. This year, I’ve decided to focus on me. On making myself better. Both physically and emotionally (more on this in the next post).

I have a trip scheduled to NIH on February 24th for a couple days to do another bone marrow biopsy (since the last one got “goofed up”). During this trip I’ll also see the dentist (to check in on the salivary glands not working thing), the optometrist (my eyes are getting worse, I’m not sure if it’s the meds or the old age) and the gynecologist again. All very exciting stuff.

Lastly, here’s a little side-by-side to show some pretty incredible progress. Can you believe the photo on the left was me just 7 months ago? My hair is coming in nicely, like, people think that my hairstyle is intentional and I’m constantly complimented on my “pixie cut.” And as you can see in the photo my skin has returned back to normal. No more need for me to show you my armpits. Unless you really want me to so maybe next time.

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One day at a time

Preface. I’m trying something new. I’ve included a recording of me reading this post. The is because I recently read a book by one of my favorite authors. Awesomely enough, it turns out she also did the reading for her audio book. It was fascinating to hear her read her words, in her own voice. So I thought I’d treat you guys to the same.

If you want to hear this blog post read by yours truly, click the button with the orange/white arrow below:

I know. I haven’t updated you in 45 days. And now you’re probably thinking “Great, I’m going to need some pudding to get through yet another Ashley-novel.” But. I’ll try to keep this short. Well short-ish. Keyword. Try. Okay. That’s probably not going to happen. Go get your pudding.

Since the last update I spent 10 days at NIH and started working again. I actually started working last Monday so I’m not THAT far behind.

But before I get ahead of myself…before my trip to NIH, I had a couple things I was complaining about.

1. Daily throbbing headaches — I wake up every morning with these and they only subside when I take a caffeine pill. Then they come back with a vengeance when I exert myself wether it be exercise or simply walking up a flight of stairs. P.S. It’s not a caffeine addiction. Dr. Meyer told me so.  And he’s a doctor. I trust him.

2. EXTREME thirst — I’ve been drinking upwards of 15-20 cups of water per day and still feel the need for more. Like, I’ve had times where I was eating and needed water to help me completely chew it and swallow it.

3. Stiff joints and muscles — When I get up after sitting down for more than a couple minutes, I have to get up all cautiously like a person who has been cramped in a tiny box because my joints hurt so bad. This doesn’t feel like the general pain that comes with aging. At least that’s what I keep telling myself.

4. Noticeable swelling in my left ankle.

5. Recurring numbness in my pointer and middle fingers of my right hand and cramping between pointer finger and thumb in both hands.

6. Insomnia.

7. Sugar (artificial, the kind in fruit, milk, etc.) has begun to leave an awful taste in my mouth — I assumed this was a delayed effect of the chemo and people kept saying I should be thankful for this. I am not thankful for this. Sugar is in a lot of stuff. And is delicious. Except, it’s not delicious anymore.

So before my scheduled trip, I told my doctors about these issues. They discussed among themselves and hypothesized that something might be wrong with my Adrenal Gland (this is the gland that produces a bunch of hormones including cortisol). The way to test this is to get a synthetic dose of cortisol and monitor the levels in the body for 2 hours afterwords. Since this test takes ~3 hours to do, the only time they could do this was on Sunday which was a day before I was scheduled to be there. So instead of flying out Monday the 26th, I flew out on Saturday the 24th. I then spent Sunday morning having the test done. A couple hours later, the results were back and my Adrenal Glands were working properly. A little bummed as this would have explained the reason for multiple issues. But it was back to the drawing board.

Since this was my 6 month follow-up I had the basic tests completed — a pulmonary function test, an echo, an EKG, labs, and a bone marrow biopsy. On this trip, I also saw the dentist and the gynecologist.

The pulmonary function test wasn’t the greatest because I did have a cold and it’s a little hard to measure my breathing function when my nose is running and I have to cough every once and a while.

The echo and EKG were fine.

The dentist discovered that my salivary glands aren’t working at all (e.g. I’m not producing saliva), which is why I was drinking so much water. It wasn’t because I was dehydrated, it was because my mouth was dry! I was prescribed some artificial saliva to use and was told the problem would resolve on its own. The salivary gland disfunction is caused by GVHD (remember the skin issues, the GI tract issues — those were all caused by GVHD, as well).

Dr. Holland ran some additional labs (on top of the normal ones) and by one of them he was able to determine that my Methemoglobin number was a bit high. WTH is Methemoglobin? I’m not a doctor but my understanding is that when this number is high the red blood cells cannot effectively distribute or release oxygen to body tissue. This is a common side effect of one of my medications and would potentially explain the headaches, muscle and joint stiffness, and insomnia so we decided to switch me to a different medication. I started taking that about a week ago and I haven’t noticed a huge difference but I’m assuming the previous medication is still somewhat in my body. I’m trying to be patient.

Speaking of medication…apparently I could be a drug dealer now.
Whenever I go to NIH I get refills of my medications. It’s kind of like Christmas. Except they’re something I really don’t want. And no. I’m not a drug dealer. Nobody wants the drugs I have. I promise. I was considering this being my Halloween costume considering it was so close to the holiday. GI Jane was the other option (since I have the hair for it). Unfortunately I was still at NIH. And was sick the night of Halloween so it was a relatively uneventful night. I’m sure I watched endless hours of Friends re-runs on TBS. Or Law and Order on USA.

I also had another bone marrow biopsy done (this was my 6th one). From the biopsy they run lots of tests like chimerisms, cellularity (e.g. how much of my blood is cells vs. fat), and something called cytogenetics (this is where they check the chromosoms). The cytogenetics is where they noticed the changes that they were concerned about back in February so this is an important thing for them to continually check; however, this time, they “goofed” up the results (Dr. Hickstein’s words, not mine) and now I have to go back in three months to have another bone marrow biopsy completed. I’m not thrilled about this but in the grand scheme of things another bone marrow biopsy isn’t the worst thing that could happen to me.

I also saw the gynecologist while I was there. We’ll just this skip this subject because no one likes to talk about that. Or hear about it really. So, I’ll move along.

This trip was a little special though. Not only because it was my post 6 month follow up and that’s a pretty big deal in bone marrow transplant patients but because I had some family out with me as well.

Let me explain.

A person can get GATA2 one of two ways. The first way is that the GATA2 mutation can randomly occur and the other is you can get it from a parent. If the parent is GATA2 positive there is a 50% chance it will be passed to their child. Once I found out I was GATA2 positive my parents were tested as well as my brother. My mom and my brother were negative (which is why I was able to get my brother’s bone marrow — if he was GATA2 positive it would have defeated the whole purpose) but my dad tested positive for the mutation. Since my dad had it, that means he likely got it from one of his parents and each of his siblings had a 50% chance of having it as well.

Let me just say that NIH hit the GATA2 jackpot with the Vetter family. I have 8 aunts and uncles — all were tested and 6 of the 8 have it (folks, that’s 75% — not 50%, but 75%). Most of my aunts and uncles have kids (I have 15 cousins) and most of them are being tested as well. So, since I was going to be at NIH, 2 of my aunts that are GATA2 positive flew out to visit NIH at the same time. NIH is interested in studying everyone with the mutation and NIH is kind of a labyrinth and having someone familiar with the maze is super helpful.

Jeanne and Carol (my aunts) arrived on Monday and we spent the rest of the week going to our numerous appointments and talking about our experiences. On Friday, my other aunt, Trisha (who is GATA2 negative) wanted to get in on the NIH action so she flew out to DC to meet us for a weekend of site seeing.

Over the weekend we walked over 20 miles and I was able to test my tour guide skills.

On Saturday we saw the Arlington Cemetery.
The Lincoln Memorial.
We did some reflecting in the Reflecting Pool.
Then we saw the Vietnam Veterans Memorial
and the Korean War Memorial.
The Martin Luther King Jr. Memorial was next.
And then the Franklin Delano Roosevelt Memorial.
We then walked over to the Thomas Jefferson Memorial.

And then the Washington Monument.

We swung by the National WWII Memorial.
And also by the White House.
That night we went to Georgetown Cupcakes (not the ‘real’ one, but the one in Bethesda).
IMG_0734 IMG_0740
On Sunday we went to the Air and Space Museum and took a gander in the Hirshorn Museum.
We ate lunch in the National Museum of the American Indian and then visited the Botanic Garden.
There we saw the BAPPP (don’t ask) and some beautiful orchids.
IMG_1147 IMG_0766
We also saw the front (and back) of the State Capitol.
Then Ubered to Georgetown.
There we saw the university.
And The Exorcist stairs.
And the (real) Georgetown Cupcakes.
We meandered along the waterfront.
And eventually made our way back to Bethesda and had ourselves some very deserved margaritas.
I got home on Monday the 2nd and took multiple days to adjust to being back.
Then the following Monday I started working. (And yes, with the blessing of my doctors.) Per the recommendation of about a dozen people, I’ve started working just part-time. I’m so excited to be back on a some what normal schedule. Unfortunately that means no more staying in my pajamas until noon but I think I’ll manage. On Wednesday (day #3) I got home and was so exhausted. I just crashed and didn’t get off my couch until I felt too many hours had passed and I needed food. It’s not that I have a physically demanding job. Because I absolutely don’t. I think it’s mental exhaustion that I’m experiencing so I’m glad I’m only part-time for now. One of the great things though, is seeing many friendly faces that only 7 months ago were wishing me a speedy recovery.

I’m getting there. One day at a time.

5 months

It’s been 5 months. 5 months to the day since I was sitting in a hospital bed being infused with Shaun’s cells. 5 months ago I was vomiting. And quite honestly having a pretty terrible day. Thinking back to that moment I can remember exactly how I felt. It was awful. Today. Today I’m much better. Still not 100% because apparently that will take another couple months. I do just want to yell at my body to suck it up and get on with it already but I know it’s doing its best.

I feel like a lot has happened over the past 5 months but when I make a list of the things I’ve accomplished I feel bad that list isn’t longer. I suppose if I were to list out all the movies and episodes of various tv shows I’ve watched. Or the number of articles I’ve read. Or summed up the amount of time I’ve spent at hospitals and with doctors it might be impressive but I’m honestly disappointed that I haven’t done more. I only begun yoga a couple weeks ago and still cannot walk up a flight of stairs without becoming exhausted. Running? That’s just out of the question. I still haven’t knitted. Or cross stitched. Or learned a new language. Or to play the piano. Confession…those last two I wasn’t expecting to do but how cool would it have been if I had. I did get a new neighbor who plays the piano nightly and that’s sort of the same thing as me learning, right? I mean, I do turn off my tv and just sit and listen. Piano is actually on my list of things I want to do but just not now. I think I need a lot more concentration for that than I currently have. (Case in point…look how jumbled this post is! I feel all over the place.)

Among the upteen things I’ve learned, I’ve learned that recovery is hard. I‘ve been waking up daily with headaches which I am pretty good at catching before they get too bad. But when I don’t catch it. And it does become bad. I can’t do much. I don’t have the energy. Or the motivation. And I don’t get out of bed until 10. And I stay in my pajamas all day. And convince myself that cereal is an okay thing to have for dinner. But! On the flip side, I also have days that are great and I’m productive. And feel like I’m really making progress. I think I should have gotten a list from the doctors of what “progress” looks like to them. It would have been helpful so that I could look at the list and say “Yes! Ha! Look how I’m progressing!” I do realize though that I shouldn’t be comparing myself to others right now and that I can measure my own progress based off the fact that 5 months ago I felt like I was going to die and today I don’t.

The doctors did tell me (maybe “warn” is a better word here) that it would take me 6 months to 1 year to get my energy level back and I didn’t really believe them until now. Now that I’m 5 months out. I can believe it. I couldn’t imagine having a job right now. Or kids. Or pets. Anything that relied on me. Because on those days where I don’t want to get up. I’d be forced to. There are lots of days I let the dishes pile up and wait a week longer than I should to take out the trash. But really. I did those things before. I just feel like I have all the time in the world right now and that I shouldn’t let that happen. Sometimes you just have to forgive yourself. And I do that a lot.

Speaking of forgiveness, I didn’t ever tell you the results of my chimerism test that was redone at the beginning of September. I’m sorry. (I did just look and I got the results only 13 days ago so now I don’t feel as bad for not telling you sooner but it was good news so I should have at least informed you.) So, remember how I had the chimerism test done and my CD3 number had dropped from 34% to 29%? After the retest, the number had risen to 52% which is excellent news and means that I won’t need more of Shaun’s cells. (Sorry, Shauny, your cells will continue to be sitting in a freezer at NIH for now. Just chillin’. HA! See what I did there??)

At the end of the month I’ll be going back to NIH for my Day +180 tests. Another bone marrow biopsy. Labs. And I think I get to find out if I’ve actually became infertile. Which I’m pretty sure I have because I’ve been having these hot flashes ever since I got that one shot to stop my period. The shot that was supposed to last 3 months. And now it’s been 5. I’m convinced I’m postmenopausal. Is craving red meat a postmenopausal symptom? If so, I definitely am. At the age of 29. Cool, huh? But, we’ll find out for sure. I think. So stay tuned! I’ll even show you my armpit again soon.

Then the week after I’m at NIH I get to…wait for it…GO BACK TO WORK. Yepppp. “GET TO.” I told BloomReach that I’d like my return date to be Wednesday, November 4th. I know. I know. You think I’m insane. But I’m ready to get back to normal. Get back to a schedule. Get back to ME! (And the doctor said I could go back to work post 6 months. I’m really just following the doctor’s orders. Like a good patient.)

Anyways, 5 months ago. This was me*.
And this is me today.

Yes. My hair is growing back. I’ll post about this soon. It’s an exciting topic.

*Disclaimer: This photo was actually taken on May 2nd, not May 1st. But it’s close enough. And since technically it’s already October 2nd on the East Coast these photos were taken 5 months apart. We’re basically in a time travel or something. Don’t question it. It’s just science. Trust me.