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!
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