Victoria Nefflen

First post: Oct 19, 2020 Latest post: Dec 3, 2020
Hi everybody and welcome to my CaringBridge! If you’re here you probably already know a little bit about my situation but for those who don’t, I’ll give you the short version: my name is Victoria (but please just call me Tori), I’m 22 years old, and I’m currently battling a bone marrow cancer known as Myelodysplastic/Myeloproliferative Overlap Syndrome, or Myelofibrosis for short. This is going to be my official platform for any information regarding my health / ways you can help me, and I’m going to try and update it as frequently as possible so if this journey is something you’d like to follow feel free to tag along!

And now the moment you’ve all been waiting for - the lengthy, mostly unabridged version of how all this cancer business began, enjoy:

I first discovered I was having health complications completely by chance in January of this year. I’d known for awhile that my immune system wasn’t the greatest, as I was constantly getting sick and then staying sick for weeks, sometimes even months. However, I was also a full time college student who worked 30 hours a week, in addition to all the student groups and activities I was involved in, and so whatever health issues I seemed to have had I’d always assumed stemmed from the lack of sleep, poor diet, copious stress, etc that went along with the “college lifestyle”.

Unaware I had any serious underlying health concerns (aside from being an overworked college student), I applied and was accepted into the Peace Corps in December of 2019. However, in order to be cleared for service the Peace Corps requires applicants to go through a number of tests and evaluations in order to make sure they are fit to serve in a foreign country with limited access to doctors and care. It was through one of these tests that I discovered I was anemic in January of 2020. Initially, my doctor believed the anemia probably wasn’t that serious, so she advised me to take some iron supplements and then get my levels checked again in a few weeks.

After taking iron supplements for roughly 4 weeks I was tested again in February, but rather than getting better, my results showed I had actually grown worse. At this point I realized there would be virtually no way I would get medically cleared to join the Peace Corps before the deadline in March, which is roughly about when I began exploring other options, namely, AmeriCorps. Any sane person might’ve been more concerned by the results, or decided to find a program better suited to their health needs, but I was so determined to be a part of a service program that I wasn’t going to let anything, not even my own body, stand in my way. I was also quite unaware of how serious anemia could be, so I had no reason to believe it would impede me from being able to do the sort of rigorous service I desperately wanted to be apart of. So despite knowing I was anemic, and becoming increasingly anemic, I applied to AmeriCorps.

It was during this same period (around early March) that my doctor recommended I find a hematologist to get some answers as to why my anemia was worsening. She explained that it wasn’t too pressing and that I had some time before it would become absolutely necessary I see a specialist, so like any other 21 year old, I procrastinated setting up the appointment. This is also roughly when Covid began to run rampant and quarantine was being instated, so between a deadly disease wreaking havoc across the US, not wanting to begin the arduous process of seeing a new doctor, and just pure procrastination, I spent the next few months at home, without any clue how serious my condition was becoming.

From March to July my health was deteriorating unbeknownst to myself or my family. I was becoming incredibly fatigued, achey, and tired. I began to sleep for nearly half the day and noticed that it was harder than ever for me to exercise and stay active, that my whole body felt terrible. But this was also during lockdown, when everyone else seemed to be going through this exact same slump, so I assumed that my lethargy was the result of being cooped up inside for months, that I was simply dealing with a depressive episode. It also doesn’t help that I actually was dealing with depression at the time. My senior year had been ruined due to Covid. I never got to have so many of my “lasts”, never got to graduate and walk across the stage, never got to say goodbye to some of my closest friends from university. I was furloughed from my job and had no source of income, I was super worried about whether I would be able to find a job in the instance I wasn’t accepted into AmeriCorps, so it’s not unreasonable that I chalked my inability to get out of bed up to my mental health.

What I hadn’t realized, however, is much of my exhaustion and lethargy was the result of pretty rapid declines in my cell counts, that I was becoming increasingly and critically anemic. There’s a lot more to the story of how I ended up where I did in AmeriCorps that I won’t go too in to detail here, but all you need to know is that in late June I interviewed for a team leader position with AmeriCorps NCCC, was hired on the spot, and then told I had two weeks to move out to the campus in Iowa. At this point I still hadn’t seen a hematologist, but I was so ecstatic and over the moon about getting the job I didn’t see why anemia should hinder me from going. In preparation for the move, my doctor suggested that I get my blood counts checked one last time, just to see if there was any improvement, and then I could just find a hematologist once I moved out there.

So I got my bloodwork done, packed two suitcases, and moved to Vinton, Iowa. I began team leader training, got myself settled in, and was so excited with where I was and what I was doing I had almost forgotten about the tests I’d had done before I moved. Then, a few days after arriving, my doctor called with bad news: my results came in and they showed I was dangerously anemic, that something was seriously wrong, and that I would likely need a blood transfusion within the week. She also told me I needed to find a hematologist immediately, so after only having just arrived, I suddenly had to navigate finding a specialist, getting a blood transfusion, and unearthing what was wrong with my body all on my own, in a brand new state, with brand new people I had only just met, all while starting a brand new job.

After tracking down a hematologist I underwent extensive testing, which determined my anemia was likely being caused by an issue in my bone marrow. I received my first blood transfusion to help me get my hemoglobin count back up to a safe level, and was then given a bone marrow biopsy to check for a few different forms of cancer that could be causing the anemia. I was terrified. I was dealing with so much change and so much unknown. I had no idea what to think or to feel.

A few weeks later the results from my biopsy came in and my hematologist gave me news no 22 year old wants to hear: I had cancer. I was stunned. Here I was, on the brink of my life, finally doing something I found meaningful and just like that it was over. We discussed my options, but ultimately he and I both agreed that I needed to move back home where I would have access to hospitals better equipped to handle a disease such as mine. You see Myelofibrosis is already incredibly rare, but it’s even rarer in someone as young as I. Moreover, the only “cure” for my condition is a bone marrow transplant, a risky, long and arduous process made less risky when the donor is a family member, making it necessary that I live and receive treatment close to my potential donor. At the very least, my hematologist insisted I get a second diagnosis and recommended I go to Johns Hopkins for it, if only for a short while.

So reluctantly I took medical leave from AmeriCorps and drove 16 hours back home to Maryland, hoping this would all turn out to be one big misunderstanding and that I would soon be able to return to Iowa, but knowing that that probably wouldn’t be the case. I felt defeated, heartbroken and scared, but I knew that going home was what I needed. I needed to be back in the arms of my support network and loved ones, I needed to be in the care of doctors I could trust and depend on.

So in August of this year I returned home and started going to Johns Hopkins, first to get a second diagnosis, and then to begin receiving treatment after my diagnosis was confirmed. I ultimately had to resign from AmeriCorps a month after I began medical leave because there was virtually no way I could return, nor should I have in the state I was in. However, I can’t thank my staff and fellow team leaders in Iowa enough for all they did for me until I was able to come home, and will never forget the kindness and support they bestowed on me during one of the hardest periods in my life.

So where are things right now? Currently, I’m receiving treatment at Johns Hopkins, and am laying the groundwork to hopefully get a bone marrow transplant in the next 4 to 6 months. I get my cell counts checked once a week and usually receive blood transfusions every 2 to 3 weeks. Recently, I’ve begun a light form of chemo called Azacitidine and started taking a medicine known as Jakafi, both of which are aimed at getting the number of “cancer cells” down as low as possible before transplant. During this time we are also checking family members to find my potential donor, and getting my body as healthy as can be so it’s strong enough to get through the transplant process. I live at home with my mom whose my singular caretaker and my little sister who keeps me entertained day to day, and am blessed to be able to sleep in my own bed every night (though the commute to the hospital is pretty gnarly). Beyond that there’s really not much else to it! I’m just your average, run-of-the-mill, unemployed, 22-year-old with too much time and garbage bone marrow!

Tori xx
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