The Beginning
(Post 1 of 3 to start.)
As they say, to not bury the lede...
During the last week of October, my girlfriend, Anna, called my younger-older brother, Marc (a pharmacist), because I was having yet another migraine. Over the course of the previous two months, I was initially diagnosed with complex migraines.
But this time Anna could tell something wasn’t quite right. When Marc arrived, I couldn’t communicate my name, day of the week, street address, you-name-it. Marc took me over to the ER for the 4th visit within the last couple of months. After waiting a few hours in the ER, I developed a fever, which (retrospectively, thankfully) prompted a concern about meningitis and earned me a spinal tap. I was then admitted to the hospital, and days later, on October 30th, came to be diagnosed with a unique presentation (more on this later) of B-Cell Acute Lymphoblastic Leukemia (commonly called B Cell ALL). I have Cancer at age 25.
Wait, back up. How did you go from having migraines to having cancer?
Great. Question.
From what I can tell, it started with a single migraine - the worst one of my life up to that point - which woke me up in the middle of the night and gave me some nausea and vomiting. It kept me up for a little over an hour and a half and then I managed to go back to sleep. When I woke up, I was fatigued and my Apple Watch noticed my heart was in AFib for a little while, but the urgent care didn’t have any cause for concern, and both resolved before that evening. I really thought it was just a fluke at the time. I mean, outside of breaking my collarbone a few years ago in an attempt to snowboard, I had, thankfully, been a relatively healthy young adult.
However, I then had three ER trips in the same week the last week of August / first week of September and the first one was pretty scary. Anna had convinced me to do a virtual Yoga class and, at the end, when the instructor asked me for feedback, I was having mouth numbness and couldn’t find the words to speak (aphasia). Naturally, Anna thought I was having a stroke and drove me to the ER. They ran both a CT and MRI on me, as well as blood work, which all showed to be fairly normal (outside of sinus ossification). So, they diagnosed me with complex migraines with "aura" (what they called the temporary aphasia and numbness) and referred me to a neurologist.
It took a few weeks to see a neurologist, and in that time, I had smaller, shorter-lasting headaches along with other just strange and seemingly random and perhaps unrelated symptoms too. Thankfully, though, no more ER trips until the one with my leukemia diagnosis. I had some general body fatigue, sinus pressure, a weekend of GI issues with nausea and vomiting - just generally not having a good time for a couple of months there.
When I saw the neurologist, he agreed that they’re probably migraines even if it was unusual (usually people develop migraines in their teens). He prescribed two medications - one a monthly preventative, and another one to use when I get the “aura” symptoms, like spots in my vision or aphasia. When I had my first chance to use the latter, it worked! Within 90 minutes of my pain starting, it began to fade and I was able to get out of bed and enjoy my night and cook dinner with Anna. About a half week later, I had the utmost joy to use it again, and it worked again! At the moment, it honestly seemed like the diagnosis fit and this would be my new reality. Definitely not ideal though - for any of you that live with migraines, I feel for you. They suck and ruin your entire day without any warning.
However, these random symptoms were still happening. Those small, quick headaches were still very annoying and distracting (especially when working on a screen), but no medication really made sense to take due to the quick-acting nature. Some random vomiting, more fatigue, sinus pressure, and another couple of days of GI issues (which at this point, started seeming like more than just bad luck) really started bringing me down. Then, I started getting some double vision. Pain here and pain there. What was going on?? I called my older-older brother, Tim, (an anesthesiologist - really, really lucky and privileged to have two brothers and a sister-in-law in the medical field). He lovingly laughed at my bad storytelling and called me a “hot mess” at my plethora of symptoms which made me laugh and calmed me down. Unfortunately, there just wasn't enough evidence at the time to suggest something else was wrong and my best course was to not stress out and just wait until something else happened.
And that "something else" ended up being that migraine on that last week of October that landed me in the ER for the 4th time in 3 months.
What is Leukemia?
Leukemia is a cancer of the blood, which means it's pretty different from other cancers. Your blood is made in your bone marrow, where one type of cell - a type of stem cell - divides and becomes more specialized. Eventually, it creates primarily three different blood particles: red blood cells, white blood cells, and platelets. There are a bunch of different types of specific white blood cells and my type of leukemia is specifically with “B-cell” white blood cells. Rather than the parent cells called “lymphoblasts” (or “blasts”) maturing into B-cells, they escape the bone marrow prematurely and into the blood. They also use more of the body’s resources to replicate and make more blasts instead of other useful cells. These blasts can’t fight infection, so your immune system can become weakened, leading to infection and other symptoms.
Wait, so if it’s leukemia and should be in your blood, how come it took a spinal tap to catch it?
Yeah, so that’s where things get interesting - even for my doctors!
My blood was usually within the normal limits, since even my first ER visit. It was very strange that these blasts were not detected in my blood. However, my doctors figured that they would find it in my bone marrow. With the ALL diagnosis though, they made arrangements to transfer me to Riley’s Children’s Hospital. (ALL is the most common childhood cancer and young adults do better with the pediatric treatment plan, so I’m thrilled I’m able to work with the doctors over there! Also, it feels like my life comes full circle a bit after spending time raising money for Riley Children’s Foundation while at Butler University.)
After the transfer, on the first Monday of November, I had surgery to put in a port for chemotherapy, another spinal tap, and a bone marrow biopsy to confirm they could find the blast cells there. I should also mention that the number of blasts they found in my spinal fluid was really, really high, so they wanted to start treatment for that as soon as possible. As such, during surgery, I also received my first dose of intrathecal chemo (chemo injected straight into the spinal fluid).
And then, things became more interesting and, honestly, pretty scary.
My team of doctors came into my hospital room and told Marc and me that they couldn't detect any blasts in my bone marrow. This was extremely unexpected. An ALL diagnosis requires at least 20% of blasts to be found in your bone marrow - so now my doctors were wondering if they needed to change my diagnosis.
Over the next couple of days, my medical team did more research and reached out to 17 other hematologist-oncologists across the nation to see if there were other patients like me - with these blasts only showing up in the spinal fluid, and not in the blood or bone marrow. They had me do a PET scan as well - to make sure there wasn't a tumor anywhere in my body that was missed - which came back, thankfully, negative.
Meanwhile, for me and my family, the uncertainty of no longer having a concrete diagnosis was unsettling. The fact that the cancer couldn't be found in my blood initially seemed liked good news (less cancer, the better, right?), but in reality, it just made my case more unique and, consequently, my prognosis more uncertain.
Two long days later, on Wednesday, my doctors let me know that after consulting with the other doctors across the U.S., they all agreed that my B-Cell ALL diagnosis was the best fit and the corresponding treatment plan was the best path forward.
My entire treatment for ALL will likely last for 3 years, but the first few months of treatment are much more intense than the later "maintenance" phase of treatment. The goal of this first phase is to kill off as many of the cancer cells as possible and then the later phases are to make sure it doesn't come back. A lot of the recent medical progress with ALL has been around decreasing the likelihood of relapse.
That night, I started my first phase of treatment which would last for the next 5 weeks. Anna and I learned more about chemotherapy in a 20-minute conversation with a very chatty nurse than I'd have preferred to know in my entire life. As I watched this chemotherapy drug going into my body (aptly nicknamed the "red devil"), I found myself the most relaxed I'd been in that last week in the hospital - simultaneously finding comfort in the fact that I now had a treatment plan and being acutely aware that things don't always quite go to plan.
Continue reading here https://givingitmyall.com/phase-1/
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