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.

8 thoughts on “One day at a time

  1. Congrats on going back to work, Ashley! And loved the description of your sightseeing with your aunts. Thanks to your family for helping us to understand GATA2 better – it’s an important contribution. Best wishes, Nurse Ann


  2. dear ashley,

    i loved hearing your voice/ story…. you continue to amaze me. i am thrilled that you are back at work, and resuming your strength… oh yeah…i never have pudding in the house….but usually ice cream. however, i didn’t have any when i listened to the post… next time, i must make sure there is ice cream!! xoxox one more thing…the purple flowers coming out of your ears? well, that image needs to be part of our ‘series’ of ‘head shots’…right?


  3. I literally just got through your text and the rest of the pictures, Ashley. Nice! It was great to meet your aunts, and it looks like you all really made the most of your time here. It’s only taken me about 10 times as long to go to all the places you went to on this past visit, lol. I love the Korean, and Vietnam War memorials, I think they were designed really well, and capture the magnitude of the loss and sacrifice. I’m glad you hit the Hirshorn as well, it’s one of my favorite galleries here. On your next visit, you may want to see if the Phillips Gallery in Dupont Circle has any good exhibits showing, I think you’d really like that as well. A former private home / mansion of a collector, Duncan Phillips, converted into a gallery. They do some interesting things there. And lol on the BAPPP…….Well done.

    So, I loved your “A Day In the Life” account of your NIH visit, and I was happy to read that you’re working again. What is your new job? Whatever it is, I hope that you like it, and I hope your stamina has increased somewhat, too. Your comment about drug dealing made me laugh. But seriously, it’s a nice blog, and it really gives one a good perspective of what a patient experiences at NIH. Your explanation of the genetics of your family in regards to GATA 2 was very interesting as well. You really did hit the genetic “jackpot”, didn’t you? See wry smile……..

    Lastly, and as always, thank you for generously acknowledging Will in your previous post, he really appreciated it. I think I told you he’s going to Towson U. for graphic design, but is still very much into the EM. He’s learning to code on his own, and creating a website for himself, which is coming along nicely. I’ll have him send you the link when he’s finished  For whatever reason he soured on Dee-jaying for the campus station, and has tried to broadcast himself, with mixed results lol. He is nothing if not tenacious, however, sort of like you 

    Take care, I look forward to seeing you and your aunts on your next visit, and I wish you all the best.



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