Prelude

This will, hopefully, be my last blog post. Today marks the one-year anniversary of my allogeneic bone marrow transplant. I cannot thank you all enough for your love and support over the past year and a half. Please know that I read and appreciated every single comment you wrote, and every text you sent. There’s no doubt that this ordeal has been difficult, but it has been made so much easier by you.

In the week leading up to my transplant, I had the idea to take daily pictures of myself to capture the changes my body would go through. While I did miss the changes brought about by my first two rounds of chemo, what I was able to capture still feels rather remarkable. You can see the compilation in video format here: https://youtu.be/qQzQaLYNfXs

At my next doctor’s visit, I can finally elect to de-anonymize with my donor in hopes of meeting her. At the time of this writing, I know next to nothing about her. If I am able to get in contact with her, I will be sending her a link to this blog. For those of you who have continued to follow my journey, I would sincerely appreciate a kind comment on this post to thank her for the gift she has given me.

Medical

Thus far, there have been no signs of disease recurrence. Two days ago, I had what will hopefully be my last bone marrow biopsy (results still pending). If all goes as planned, I will continue on the investigational chemo, Crenolanib, through early July (a twice daily pill) along with multiple other medications (~100 pills per week; acyclovir, tacrolimus, ursodiol, Bactrim, pilocarpine, etc). Unfortunately, I continue to have mild, intermittent transaminase elevations (markers of liver injury) which we suspect are a result of graft-vs-host disease. Because of this, I will have to continue taking immune suppressive therapy (tacrolimus) for some time longer (at least through the fall). Although immune suppression does help address graft-vs-host disease, it also significantly increases my risk for, and potential severity of, infections. Ongoing immune suppression also increases my risk for leukemic relapse and secondary cancers such as thyroid, lung, prostate, etc.

Moving forward, I’ll continue to be regularly monitored with basic blood work (blood counts, kidney function, liver function ~monthly) and more specialized testing (thyroid testing, testosterone, bone density (DEXA), cataract development, cardiac functioning (Echo), and pulmonary functioning (PFTs)). I’ll need many of my childhood vaccines repeated over the next few years (hepatitis a/b, pertussis, tetanus, pneumococcal pneumonia, zoster, meningococcus, HPV), some of which will require me being off immune suppression and at least 2 years out from transplant (measles, mumps, rubella).

Luckily, my oncologist just so happened to do her heme/onc fellowship at Penn, where I will be moving for Derm residency. Consequently, I am hoping for an easy and smooth transition of care.

Experience:

Where to start?

Overall, I am in a much better place now than I was a year ago. I’ve made incredible strides medically and symptomatically and cannot be more thankful for them. My energy is still not quite pre-diagnosis levels, but perhaps 80%, which is more than enough to do things I need and want to. I do have some smoldering GVHD symptoms (dry eye, dry mouth, nausea), but they are significantly better than they once were and mostly tolerable with supportive medications. Cumulatively, my symptoms are no longer a barrier to me working, and I have been able to continue residency in a virtual fashion (because of immune suppression) thanks to all of my fantastic mentors and colleagues. In July, I hope to be moving on to Derm residency at Penn in a normal capacity.

Despite my general improvement, I can’t lie, I still think about and fear my diagnosis on a daily basis. Small symptoms that I would have normally written off before, I must now pay close attention to as they could be indicators of something serious (worsening GVHD, relapse, infection, etc). I’ve become one of the most paranoid people I know, mostly for good reason, but it still weighs heavily. Gone are the days of ignoring my DRENCHING night sweats, rapidly evolving petechiae (~small bruises), and extreme fatigue (i.e. all the symptoms I ignored for months leading up to my diagnosis). Only time will tell how much these fears and obsessions pervade.

I wish that I had some profound lesson or insight that I could share from this whole experience, but really, it’s only made me realize what I should have already known before. It’s brought me closer to family and friends and appreciative of the strength and necessity for those relationships in one’s wellbeing. It’s allowed me to no longer just sympathize with patients I see, but truly empathize with what they are going through. Since being back in residency, I’ve even seen a few patients who are themselves gearing up for a bone marrow transplant – which has made me even more thankful for my training to contextualize what is otherwise such an overwhelming experience.

I’d like to close by repeating for one final that I sincerely appreciate all the support this blog has received over the past year. This blog has not only been a useful tool to keep us all connected, but also a medium of catharsis for me as well. Early on in my diagnosis, I truly felt no reason to hold back in what I shared – I wrote exactly how I was thinking and feeling and made no effort to obscure any detail. This was made easier by the fact that I legitimately felt like, and though that, I was dying. Not dying in the colloquial or hyperbolic way, but genuinely dying. I was in severe pain from a surgery my body didn’t possess the reserve to recover from, I was incomprehensibly anemic, and I was suffocating from a diagnosis that more often than not proves fatal. I felt that the likelihood of making it through my initial hospitalization was so low that on the first night of my diagnosis, I told Taylor, my then girlfriend, all of my bank account details, my social security number, the login credentials for my computer and email – everything I could think of to allow my family access to information when I was gone. That night, the night of my diagnosis, I was prepared to die. When I finally gained the strength and wherewithal to begin documenting my story, I saw no utility in censorship. That raw emotion is part of what made this blog, hopefully, so engaging and meaningful to write. And while I do continue to share some of the fears I held during those first few nights in the hospital, I can thankfully say that I’m no longer compelled to write with that level of transparency or intensity. As such, it is time for this blog to come to a close.