It seems like it would be really hard to say, but here it is: I have cancer. If you're reading this, you likely already know this. Over the last 10 days, since my official diagnosis, I have had the time and space to really settle into what this means for me. I have done a lot of thinking, a lot of reading and researching, and an astonishing amount of joking around. I believe that I have come to a healthy head space where I am able to think of my diagnosis not as this dark, hopeless, thing looming over the rest of my life, but as something I have the opportunity, even the privilege, to learn from and live with. Before I get into it though, let's talk about what's wrong with me and how I found out.
October 31st. I am at work, dressed in a sheet, pretending to be a ghost with my friend and coworker, Carly. Early in the morning, I have an appointment to establish care with my OB/GYN. The appointment is normal, and goes as planned. My doctor is lovely and kind and I am comfortable and happy that I got that appointment over with. I go downstairs to have my labs run, since it was my first appointment with the doctor. I have a hormonal imbalance called PCOS, so the doctor needs my blood work so she knows how best to treat my symptoms. A few hours later, the doctor calls me. She informs me that my white blood cell count is critically high. "A few of your other levels are elevated, and a few others are low. Your white blood cell count is so high though, that you really cannot ignore this," these are the first words that alert me to a possible change in my life.
The OB/GYN recommends that I get in to see my primary care provider as soon as I can. She informs me that a normal white blood cell count is typically between 4,000 and 11,000. Mine is 215,000. Feeling unnerved, I contacted my PCP's office, where I am told that my doctor is booked, and I will not be able to get in to see him. I tell them what's going on, and they let me know they will do their best to get me squeezed in sometime in the next two days, and that they will contact me. I spend the next few hours searching Dr. Google for what a white blood cell count that high could mean. After hours of waiting, my PCP's nurse calls me back, to tell me she has spoken with my doctor, and they have decided that I need to go to the ER immediately.
At this point, I am starting to freak out. I am not sure what is wrong, or why my PCP thought I needed to go the ER. Convincing myself that they are just being overly cautious, I call my mom, who in turn, convinces me to listen to the doctor's advice, and go to the ER. Shortly after that, I walk into the ER, where the nurses all seem to think my lab results from earlier in the day were likely a fluke of the system. They run them again to be sure.. Then they run them again.. A doctor comes in and informs me and my mother that she thinks I may have blood cancer, but that they are unequipped to do any more testing, and that they will be transferring me to a hospital with a hematology/oncology department immediately. Two hours later, I was admitted to the hospital. It was that quick, and that unceremonious, that I learned that my life was about to change exponentially.
After spending a week in the hospital, where my blood was drawn more times than I can count, I was well onto my way of receiving an official diagnosis of cancer. In the hospital, the first thing that happened was a process called leukapheresis. During this 3 hour process, the entire volume of my blood was twice cycled through a machine that separated white blood cells from the rest of my blood content. The white blood cells are then collected and removed, with the red blood cells and plasma being put back into my bloodstream. This process was done every day for three days straight, until my white blood cell count was below 100,000.
The day after my last leukapheresis treatment, I underwent a bone marrow biopsy, which is the test that would ultimately lead to a diagnosis. Also in the hospital, I was started on my first chemotherapy drug, a pill called Hydrea, that slows or stops the growth of cancer cells. In combination with the lowered counts from the treatments, the Hydrea was enough to stabilize me so that I could be discharged.
A little less than a week after being released from the hospital, I had my first appointment at an oncology clinic. That is where I learned that I have a cancer called Chronic Myeloid Leukemia, or CML. This cancer is caused by a random genetic mutation that results in pieces of the 9th and 22nd chromosomes breaking off and fusing together, creating what is known as the Philadelphia chromosome. In CML, the body creates too many white blood cells, which go on to attack healthy red blood cells. CML currently has no cure, and I will live with it until there is one.
Now that you know the general story of how I found out, let me explain how I'm doing physically. As of right now, I'm happy to report that I am doing very well. Before the diagnosis, I was experiencing few symptoms, none of which warranted looking into (little did I know!). I was slightly fatigued, which if you know me, is not out of the usual, and was having lots of unexplained bruising on my lower legs. Other than that, there was nothing leading me to believe anything was wrong.
Now, after the diagnosis, I am still doing relatively well. I am still continuing on the chemo pill, so my biggest issues are the side effects from that drug. I am losing weight because I tend to not have an appetite, I get light-headed very easily, and am experiencing an uptick in migraines. For now, these side effects are minimal, and most importantly manageable. I am currently navigating trying to add different supplements to combat things like low iron and low energy levels.
Mentally, I am also happy to say that I am doing well. In the face of hearing the word cancer, I like to think that I am doing remarkably well actually. I am very, very aware of the fact that even though I have cancer, I do have a type of cancer that is manageable, and has good prospects for life expectancy and quality of life. My cancer will likely be treatable by chemo pills for the foreseeable future (unless a cure is found). My life expectancy is basically normal, and because of the slow-progressing nature of the cancer, my symptoms will mainly be tied to the drugs I take to control the cancer. While cancer is still never ideal, I am grateful that my fight does not currently feel like trying to win an uphill battle.
That being said, let me explain something I said earlier, "I am able to think of my diagnosis not as this dark, hopeless, thing looming over the rest of my life, but as something I have the opportunity, even the privilege, to learn from and live with." As my diagnosis is, as its name suggests, chronic, it seems really easy for me to fall into despair and only focus on the fact that this legitimately changes every single day for the rest of my life. Fortunately, I have never been stuck in that mindset. From the moment I got my diagnosis, and learned that this is something I can manage and live with, I have been under the impression that I would do just that—manage and live with it.
I am scared. I think it may be slightly outrageous not to be at least a little scared. Up until a few weeks ago, I was a relatively healthy woman in my 20s, just getting started in life. Now, everything is different. I am resting in knowing though, that my fear is not driving me. I have faced this journey so far with humor and faith. Humor, in that I have never been a serious type of person before, so it seems downright silly to start now, and faith, in that my God is working in this situation, even when I do not see it.
As I learn more about my diagnosis and what treatment as well as life in general will look like moving into my future, I am taking it one day at a time. I am trying to find the good in the bad. I'm trying to laugh in the face of adversity, or at the very least, find opportunities to grow in spite of it. As I stated, I am aware that my diagnosis could be much, much worse. I am grateful that if I have to go through this, I am going through it in what I would consider a very mild manner. My heart goes out to all those who were not given the "best-case cancer scenario" like I was. I hurt for those who are struggling through their fight, for those who lost their fight, and for those who have lost their fighters. I acknowledge that my diagnosis comes to me as a privilege in the face of countless others who were not given a chance to live normal lives despite their diagnosis.
That is why I want to be able to learn from this experience, and not just make it through it, but grow from it. Already, just weeks into my journey, I've already had opportunities to seek the rose in the thorns. I am unbelievably overwhelmed by the amount of medical decisions I have to make now, and how much communication goes on between me, my employer, government organizations, doctors, pharmacies, and whoever else has a hand in getting me through this. On the plus side though, I love doing paperwork, and now, I get to fill out paperwork constantly it seems like. I have to make a billion phone calls a day it seems, but at least I am getting exposure therapy to making phone calls, which is one of my biggest fears in life. CML is rare, but I get to connect with all kinds of new people online who have CML as well, and learn about their stories and lives before/after diagnosis. I am doing all kinds of research and reading books about CML and leukemia as a whole, but I love reading and had been in a bit of a slump until now. I experience symptoms and side effects, but I get to see how much my friends and family love me when they help me out and support me through the suffering.
While frankly, this diagnosis sucks, it is not all bad. Learning can come out of every situation, and I intend to do exactly that—learn from, in, and through this. I have always processed better by putting my thoughts down into words, so as I learn about this diagnosis and find what normal will look like from here on out, I hope to write more. I hope that if I cannot express in person how I am doing, that I can at least put a few words down here that allow my progress to be clear. For now, I am as healthy as can be expected during all this, and as happy and full of joy and laughter as usual, if not more so. I have good days and bad days, but on the whole, I do not feel weighed down by this revelation, but instead look forward to what my life holds from here on out.
To learn more about CML, check out these links!
To donate to my dear friend Mitzi, who just beat Acute Myeloid Leukemia, or AML, check out her GoFundMe!
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