Hi folks. Eddie here.
I’d like to take this opportunity to get you caught up on what’s been going on for the past four months since my diagnosis – but before all that, I’d like to provide some fair warning. Anna and I thought it would be a good idea to start this blog in order to keep loved ones abreast of my road to recovery. The intent is to provide real time information about my treatment, inject a little humor when we can, and perhaps provide a little inspiration if possible. Having said that – the simple truth of the matter is, Aplastic Anemia is a terrible and debilitating disease. Some of our my posts (like this one) may depress you, as I describe a few of the difficulties I’ve been experiencing. While it may be cathartic for me to write about how awful I feel, I realize it’s a bummer to read about. So for that, I apologize in advance. Feel free to skip these posts if need be. I promise not to get offended.
Moving on…
So what exactly happened? How did I get diagnosed with AA? (I’ll try to make this as brief as possible, but it’s a long story). Right around Thanksgiving last year, I noticed my hair start to fall out in alarmingly large clumps. I felt physically and mentally fatigued for no apparent reason. After a couple trips to urgent care and my primary care physician, I had my blood drawn and tested to see what was going on. A couple days later I got a serious call from the clinic. The doctor informed me my platelets, red blood cells, and neutrophils (white blood cells) were at critically low levels. I’m promptly instructed to have someone drive me to the emergency room, and to take care not to fall, bump my head, or cut myself, since I’d bleed out and potentially die.
Fast forward a couple hours to the ER and subsequent admission to the hospital. The hematology/oncology (blood/cancer) doctor informs me that based on initial tests, I most likely have Leukemia. Later, when no one is looking, I Google “chances of surviving Leukemia” on my iPhone.
Fuck.
Fast forward another couple of days and I find myself with a giant, thick-gauge needle jammed into my lower back, digging through my hip bone to aspirate a core of bone marrow for biopsy. Another few days go by.
When the results from the biopsy are finally back, doctors tell me they were unable to detect any cancer cells in my bone marrow.
That was a relief, and still is, since my disease is not considered malignant. Instead, I’m told I have something called Aplastic Anemia. I suppose it’s the lesser of two evils, but I’d soon learn how tough of a diagnosis that would be. As Anna mentioned, AA is pretty rare so there isn’t a ton of medical research out there on it. Treatment can also be pretty difficult since the disease affects individuals so differently. The majority of cases are considered idiopathic, which means doctors can’t determine how or why some people get the disease. It can be acquired (exposure to something nasty like chemicals, radiation, viruses) or inherited (your DNA predisposes you to AA). I’m told my AA was probably acquired.
Doc: Actually, you don’t have cancer. You have Aplastic Anemia.
Me: Umm… Hooray?
At this point, the doctors have told me they will move forward with an immunosuppressive drug therapy regimen. The thought is, since my immune system is what’s “attacking” my bone marrow and not allowing it to make blood cells, let’s use drugs to suppress the immune system and give my marrow a chance to recover.
The bad news, it didn’t work. The worse news, my body took a thrashing in the process. For every drug that’s been injected or swallowed, if there was a negative side effect, I think I got to experience it. Severe stomach pain (enough to go to the ER and get shots of morphine), mouth sores, gingival hyperplasia (an overgrowth of gums in the mouth – Google it if you’re feeling adventurous), hand tremors, muscle and joint pain, headaches, stomach ulcerations, nausea, vomiting, loss of appetite… These are just the ones that come to mind right now.
The reality is, I’m pretty sick – and I look the part too. Bald head, pale face, dark circles under my eyes… Before AA, let’s just say I had a healthy appetite for life. I was probably weighing in around 200+ pounds. Now, just a few months later, I’m down to 165 since I’m unable to eat (I get my nutrition overnight through an IV that I hook up to this tube/needle thing called a port that sticks out of my chest 24/7). The worst part is the weight I’ve lost is all muscle mass. I have this disproportionate layer of fat over basically no muscle. I’m officially skinny fat.
When I look in the mirror (except with less hair on my head)
Needless to say, the past few months have been the absolute roughest of my entire life (and for those who know me, I’ve been through my fair share of tough times). I’ve lost count how many times I’ve had to go to the ER (they actually treat me like a VIP there – I basically go to the front of the line and get a room with a bed, when others have been waiting for hours – perhaps the only perk of Aplastic Anemia, haha). I’ve definitely spent more days admitted to the hospital than at home. Hospital stays suck. It’s noisy, and you’re constantly bothered even in the middle of the night by a nurse who needs to check your vital signs, take some blood samples, shove some pills down your throat, or infuse you with platelets. (Don’t get me wrong. I actually have an enormous amount of respect for nurses and the hard work they do. I just tend to sound bitter when they don’t let me sleep).
Arriving at the Emergency Room like…
I do have my good days, and I try to stay as positive as I can, or at least smile and put on a strong face for others. Honestly though, life these days can be pretty miserable. I often feel like I’m on one of those dizzy-spin carnival rides that make you sick to your stomach and hate life. I know that in due time the spinning will stop and I’ll be allowed off this ride, but until then… round and round she goes.
So what’s gotten me through all this? How am I still standing? What’s prevented me from having a complete mental breakdown?
My caregivers, who also happen to be the three most important people in my life. My mom, my dad, and Anna. Lifesavers is probably the more appropriate term.
I plan to dedicate my next three blog entries to each one of them so stay tuned for that. I promise you I’ll write something a little more uplifting, or at the very least, not so bleak.
And if you were able to make it through the end of this long post, despite me being such a bummer and opting to utilize my always under-appreciated stream of consciousness writing style… Thank you.
Cheers,
Eddie
Still in the fight.