Today, I am almost a year post-transplant and the past 8
months have been all the things.
Getting home: February 1, 2022
I did come home early! Thankfully, I did not have any signs
of serious GVHD so I followed through with my plan to leave 20 days early. I
got home on February 1 and was super energized and elated. I had so many plans
that were put on hold. That day, I installed a new tv (new to me, it was my
friend’s old tv), set up my internet, and was ready to hit the ground running.
But that night, I started to cry and I didn’t stop crying for months. I cried
every day, almost all day, for three months. I did not see that coming, as I
was doing very well in California. I laughed regularly, trained to run a mile
with mom (and ran it successfully before I left), etc. But I guess I was still
in survival mode then. Coming home, it all spilled out of me. I had a mini
reckoning on Day 100 post-transplant. As I wrote that day, I felt: love,
gratitude, power, helplessness, fear, uncertainty, resilience, strength, faith,
grief, etc.
Hiking goal: April 2022
In an attempt to cope, stay busy, be in nature, and build up
my strength, I decided to hike 100 miles in 5 weeks. There’s not much to say
about this other than that I did it and it was a deflated victory because my
emotional pain remained. I was still crying most of the time, but now with
giant, muscular calves. And I did proudly tell my transplant doctor what I had
done at my six month follow up in May.
May – September
By May, the crying subsided and I felt truly happy again. My
six month follow up went well. I asked my doctor if it was normal or absolutely
amazing that I hadn’t gotten sick at all. He said if you go in healthy, you
come out healthy. Still, I was astounded that I felt so good in terms of
physical health after everything that happened.
In May, I also turned 28 years old. My birthday, as you can
imagine, was a big deal because for a second there, it looked like I might not
make it to 28. My entire 27th year was shrouded by the illness and
transplant. And at 28, I was officially older than my parents when they had me.
I looked ahead at an unknown future where I may not be able to have biological
children – something I always took for granted.
During this time, I began receiving all of my childhood
vaccinations again. I never gave babies enough credit for being complete
champions during this process! Although I did not have big reactions to any of
the vaccines, getting up to 7 at a time was rough and I felt sluggish for days
afterward.
I also went back to work in March and, as you can imagine,
was having a hard time. I felt pretty unmotivated in most things and work was
no exception. This job had been my absolute dream job and I worked really hard
to get there. But, as more than one therapist told me during this time, there
was no going back. It became clear to me that I needed to find a new way
forward in life because, as hard as it was to accept, I was different.
October
That brings us to today. I am on the precipice of monumental
change. In three months, I will leave my cushy job and leap into the unknown. I
have no idea what is next in the big picture, but my immediate next step is to
take a break on my own terms and figure myself out again. I am extremely
fortunate and grateful that I was able to save a good amount of money that was
not affected by the illness and transplant. I will live off of that for a
while, travel, and do conservation service work (which is completely out of my
career field).
The end of the everyday life I chose for myself before I got
sick also corresponds with the end of the immediate post-transplant period. I
got my port removed last week. Next week, I will receive my final round of childhood
vaccines until next summer. Moving forward, I will be seeing a lot less of my hematologist
at the Cancer Center. My one year transplant follow up in California is coming
up. November 12th is my first rebirth day (I prefer this term over
second birthday) and I plan to do one of the most difficult hikes where I live.
This has been a hard year, after a much harder year in 2021.
It was a year of recovery in every way, and of grief. I am ready to move
forward and live life in a new way. One of the main reasons why I am leaving my
job is because I want to do what makes me feel alive. Something I haven’t
mentioned in these chronicles of Aplastic Anemia is that a year before I got
sick, I began a life-changing journey of self-love, self-discovery, and spirituality.
It is what helped me get through the illness and transplant. And now,
post-transplant I want to spend as much time as possible doing things that make
me feel the most alive. When I am outdoors hiking, camping, watching birds, spending
time with my dog, etc. I feel present, joy, peace, and connected to the love of
the universe. I’m going to do more of that! To give you an idea of how
transformative that is for me, when I told my mom about it, she said “wow,
considering how you were growing up, the last thing I would expect for you to
turn to is nature.”
When the idea came to me about the next steps I should take,
coupled with the end run plan for the immediate post-transplant period, it felt
like pieces of a puzzle coming together after feeling lost for a long time. I
think I would have eventually made the decision to do what makes me feel alive
even if I hadn’t almost died, but it is what it is and I am not wasting any
more time.
P.S. Hair update:
My hair journey has been its own fun subplot in the midst of
everything. For a while, I wore that fabulous wig, Claire, but now she is adorning
the head of another person receiving chemo. Short hair actually really suits me
and I have liked styling it in different ways as it grows. My hair grew slowly
and unevenly until recently, so I’ve been getting regular haircuts. I chose to
leave it short for the time being because, having wavy hair, it is taking much
longer to grow out than straight hair and growing it out is its own awkward
commitment that I simply don’t have the energy for right now. So we’ll see!