Well it's been a few days now since everything hit the fan in a spectacular fashion. I'll write a quick update here to explain how I got to where I am, and hopefully I can supply updates throughout the next few months as a form of public journal. Obviously there will be times when I am unable to write. And it also might turn out that after a few days, I just have no interest in writing, but we'll take it one day at a time.
My name is not actually Bulwyf Broclergaard. Bulwyf is the name I'd like to give my first dog, and Broclergaard sounds kickass.
So a few weeks ago, I woke up with large lymph nodes. Not a big deal but the strange thing was that I had zero other symptoms except for some weak gums. I thought they might be unrelated, but I was also a bit worried about a possible tooth abscess. I had no fever, coughing, sore throat, sinus issues, ear issues... nothing that would justify having large lymph nodes. The two largest were under my ears, and it felt like they were pushing up against my ear canal. As my job was post-production sound mixing, that was an issue I wanted to get resolved sooner rather than later. My first doctors visit was the fifth day after my first symptoms arose (Sy+5).
The doctor checked out my neck and I mentioned my bleeding gums, but due to my lack of symptoms, he felt they were probably unrelated and I might just have a mild case of gingivitis or something. I was still worried about a tooth abscess, but he was thinking more along the lines of a blocked lymphatic duct. I should mention that besides my redder than normal gums, there was no pain or any specific tooth that looked especially bad. He sent me to get an MRI and referred me to an ENT. The folks at the office took care of authorization from my insurance, so that was nice. One less thing.
Later that day I got my MRI and chest x-ray and headed on home. The following day (Sy+6) I traveled to my alma mater to tailgate with some great friends for a football game. It was a grand old time with lots of heckling the other team and beers and overall a good time. After the game, we headed back home.
This is where things begin to get interesting. My sister, Kym, works in medicine and was home for the weekend. I'd been in contact with her about everything from Sy+1 so she was aware. She gave me a quick rundown and noticed that I had enlarged lymph nodes in my armpits. That pretty much ruled out the clogged duct and tooth abscess ideas. I'd been living in NYC for two years without a primary care physician (PCP), so I figured now was a good time to get one. That night I was online, and a good friend in NYC worked at a PCP office in Manhattan. She offered to set me up with an appointment the following Monday.
So on Monday (Sy+8) I went to see my brand new doctor. She was very nice and received her undergraduate degree from my alma mater, so I was a fan. She ordered blood work and we waited.
On Wednesday (Sy+10) we got the results, which showed an abnormally low number of neutrophils and an extremely high number of Lymphocytes. I'm a young male in my 20's which makes me a prime candidate for Lymphoma. That was my PCP's main worry, so after talking to some other doctors, we were able to schedule a biopsy for the following Monday. The weekend before my biopsy, I went home again to hang out with my best friend, Julian, and watch the game (I don't have cable in my NYC apt). At this point, fearing lymphoma, I thought it was unwise to drink, so I had a beer on Saturday and left it at that.
Sy+15. Monday I had my biopsy. The surgeon took a lymph node out of my groin and put it into a jar, probably. I dont actually know where they put that type of thing, but deep down I hope it's a jar because that'd look cool. "One of my lymph nodes is in a jar." Who talks like that? Well, I do now. I figured the few days after I lost the node, I could just hear a dendritic cell rounding a corner in a nearby lymphatic duct yelling, "What the crap?! I spend all this time bringing an antigen from afar to present to some CD4+ t-cells, and what happens when I get there? Nothing! Nothing happens at all because, 'New rule. Apparently lymph nodes can just disappear now.' Oh I'm sorry I didn't realize that."
Sy+18. It's now Thursday. I feel feverish and head to a pharmacy to grab a thermometer. $12.50 later, I find out I have a fever of 100.6 f. "Well, that'd probably not too good," I think. I just had surgery, so I fear infection. I call my surgeon and leave a message. After being underground for 40 minutes riding a couple trains, I emerge from some concrete steps to find a few messages on my phone.
The important one was from my surgeon. I'm glad he returned my call and proceed to return his. He picks up immediately and tells me he isn't too worried about a fever under 101.0, so my worries subside. What he is worried about is my biopsy. It doesn't look like lymphoma, but the findings are consistent with Leukemia. That doesn't sound very pleasant. I ask him what the next step is. He's already set me up with an oncologist friend of his, but he'd like me to see someone earlier if I can.
Meanwhile, back at the batcave....
Kym's been on me through all of this. Her fiance', Bill, started chemotherapy for Lymphoma nearly two years ago to the day. With the recent findings, she was not what I would call "excited." Up until now she'd been very supportive saying things like "there is no need to worry until we have a reason to worry." I agreed. I worried myself over lymphoma and that turned out to be nothing. As far as I was concerned at this point, I refused to work myself up. We had a few phone calls back and forth Thursday night and Friday morning while she consulted people she worked with about my case. I had forwarded my blood lab report and biopsy report when I got them, so she was able to review those herself.
"I really think you should get another blood test, Bulwyf." But of course, my real name is not Bulwyf. How clever I am.
"Okay," I said half listening. I was at work and trying to finish up some important things that day. "Well, the surgeon talked to the oncologist and they don't seem too worried. I should be able to wait until my appointment on Monday."
"Well, the problem is that that could be true. That doesn't mean it definitely is true. I really want you to get a CBC (complete blood count) test today... you know.. just so we know it's okay. If your count is fine then we can wait until Monday, but your neutrophil count was low last time and you have a fever now."
I'm paying a bit more attention now. She is very much advocating for this, and she has rarely steered me wrong in the past (well beyond medical issues. I've learned to listen to her).
"Okay," I say, "Well I'll call the oncologist and see if I can get in today for a CBC.
I text her some things. I try to get ahold of people. My phone dies.
Well okay. I have my work phone. But I gave all the doctors my cell phone number.
Blast. Well, you can't win 'em all right?
My phone rings. It's Kym.
"Can you just come up here?"
Now I start to worry. She wouldn't ask me that if she weren't worried, and her being worried is enough to worry me. Things are moving very quickly now.
Doctor calls back. I can get a CBC if I leave work right now. My boss gives me the green light (employer's been great through all of this) and I head downtown. They draw my blood. The doctor meets me, he's stayed late for this. My report comes.
Lymphocytes are down even more. My platelets are below 96,000 (minimum normal is 150,000). Total white count? 24,000. Maximum normal white count is 10,000. Platelets are not white blood cells. Colloquially called Thrombocytes, they are very tiny non-nucleated cells born en masse out of the ashes of the Great Megakaryocytes in the bone marrow.
This is enough for the oncologist to request I check myself into a hospital no later than tomorrow morning. Kym and Bill are already on their way from Boston, and so I decided to check myself in up there. It will be nice to be near family, and my other choice of Philly is too far from my parents' house to make it a good decision. In Boston, I'll be 10 minutes from Kym's, so if my family or friends want to make the journey up here, they'll at least have a place to stay. My parents are already on their way up.
I call that day (Sy+19) diagnosis day 1 (D+1). The doc has told me I have AML. Acute Myeloid Leukemia.
The next day is Saturday, D+2. I wake up at Kym's place and my parents are already there.
Check in. Move in. Talk to my new oncologist, Onk. It looks like I have a subset of AML called Acute Myeloid/myelomonocytic Leukemia. My teeth are shown to the intern and resident as a textbook example of this subtype of AML.
Onk looks at my wound from surgery. It's swollen and tender. She goes through the basics of this cancer and it looks like I'll be here for a few months.
Now it's Sunday. Kym stayed in my room with me last night to help me with things. It hurts to walk and I'm tethered to an IV a good portion of the day and night so it's nice to have someone around. I got one IV jack in my wrist and pricked for blood in my arms twice yesterday. Woken up at 0200 for a change in anti-biotics and a read of my vitals. Woken up again at 0530 for some more blood work. Woken up later for a re-check of vitals. Woken up around 0730 when the kitchen called to get my breakfast order. Woke up for real sometime later and ate some tasty breakfast. It's tasty and good.
Some oxycodone, anti-biotics, another blood prick, and a few hours later and here I sit in my chair.
Taken a bit by surprise by all of this, but ready to take it on. They want an ultrasound of my heart soon and I'm hoping to get a blood spigot in my chest soon so I don't have to worry about so many needles all the time. They want to draw blood every day, but with a blood spigot, they can just draw it from the tap!
Blood on tap is always better than in a bottle anyway, unless it's from a field mouse.