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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7 thoughts on “I’m still here!

  1. You are one fantastic person Ashley. I really enjoyed my time with you, Heidi and friends recently – a very special event for me. Thanks for inviting me. You’re doing great and keep evolving and re-defining yourself. This warms my heart. Love, GBob


  2. This is all such positive news! Good for you on the cats. I think doctors sometimes forget the tremendous positive impact pets can have on our lives. I’ve got two dogs, two cats, two parrots. I just wish Mr. Stinky wouldn’t continually pee in the house. Good thing we have tile/concrete floors. 🙂 I’m sorry I will miss you at the NIH! I don’t go back until April, which might be my final visit for that particular study, although another study wants to run tests on my daughter to see if she has the same genetic marker.. Right now I am fairly stable, yay! I haven’t had to use an epi-pen since July. All good! So things are looking up for these two former roommates. I think of you often. If you ever have reason to come to NE Oklahoma, we have a guest room!


  3. I like that evolving and re-defining comment above. Perfect. Animals are wonderful companions – love the names you gave your kittens – and nice on finding a creative outlet for yourself. Hope to see you when you’re here. And happy birthday, 30 is a great age. But remember too, age is a feeling, not a number 🙂


  4. I’m glad that you’re doing better. Olive and Squid look awesome. Kittens are fantastic to have around (screw whatever the health people say).
    The pottery stuff looks great as well. I’d be lying if I said I wasn’t at least a little bit jealous. I have to buy all my bowls and such.

    And yeah, a full body scan does sound pretty badass.
    Congrats on the increase in health, activity, pride, and promise.
    Keep at it, you hero, you.
    And happy birthday.
    Much Love


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