Sorry it’s been so long since I’ve posted anything, but I have a good reason for that. Really, I do.
You see, I got cancer. Yup. Acute myelogenous leukemia. Man, that hit me hard and fast, too.
Here’s how it went down:
Back in February last year, I got sick…flu sick. Body aches, runny nose, coughing, that sort of thing. I started taking ibuprofen and some OTC flu meds to feel better. It never really went away, though. In fact, it got worse, to the point I was frequently missing classes, sleeping through the ones I DID attend, and generally feeling worse. I went to see my doctor, saying I thought I had the flu, and wanted to make sure it wasn’t anything worse. Well, doc thought it was the flu, also, and had me managing symptoms. They still didn’t go away. I ended up going in for a second visit, where the doc took blood samples to test. Well, the samples came back looking really bad. Unfortunately, when they did come back, my doc was out of town and had another doc filling in for him. That doc saw my lab results and they were so bad, he didn’t want to get involved. We’re contemplating what to do about that, actually. Doc came back a couple days later, called me at 11pm, and told me to go to the ER. I went in, and I was given more tests, including a bone marrow aspirate, which confirmed my leukemia diagnosis. Things get fuzzy from here onward.
I remember being put on an ambulance in my little town and being shipped to Houston so I could be treated at MD Anderson. Once I got there, my memory is gone. My wife says I was still lucid and all, but I don’t remember it. From now on, I’m going to go off of what I’ve been told. I was in the ER for a couple of days, partly because the hospital was so full and it took awhile to get a regular room. Once I did, I was only there for a day or so. At one point, I got up in the middle of the night to pee, and I collapsed before I got there. At that point, my wife insisted on an MRI. The hospital staff didn’t object…they thought I might have hit my head and got a brain bleed or something.
Well, I didn’t have a brain bleed, but the MRI turned out to be a good idea. It was discovered that I had swelling on my brain stem. Not caused by the fall, but serious nevertheless. So I got moved to ICU. I spent the next 18 days there, because that brain stem swelling very nearly killed me and I got kidney and liver failure to boot. I think I had two rounds of kidney dialysis before that resolved, and the liver failure also resolved. I did suffer lasting kidney damage, but not so severe that I needed a transplant or additional drugs or anything. Thankfully my values now have returned to the normal range, albeit higher than they were before I got sick.
I remember a few things from when I was in the ICU…but I was gorked out on some serious drugs. I was hallucinating quite a bit, and all I remember is the room I was in (which seemed excessively cluttered at the time), the TV and computer, I remember bugs all over the place, and I remember cats in the room. The bugs and cats were not there, but they were certainly in my head. I also remember some sensation that I was being moved frequently from one room to another. The reality was that my original room got a leak in a heavy rainstorm and they had to move me once. The construction activities at the hospital caused the trouble. But I had no perception of time then, so things were all F’d up.
Sometime during that time, the doctors moved me from being intubated to giving me a tracheostomy…a hole in my trachea where they could pump the oxygen in and I would be able to use my mouth. Then they started pulling me out of the drug-induced coma and I started waking up. That period was REALLY trippy. My mind was doing some crazy shit that I still can’t explain adequately. Eventually the drugs wore off enough that I could make sense of the world around me.
Of course, the first thing I noticed was that with the trach, I could not speak well. It took a day or two for the docs to give me a ‘speaking valve’ so I could talk. Another thing I noticed quickly was that my eyesight was garbage. I couldn’t see worth a damn, and they sent me to opthamology on an emergency basis to see why. I had leukemic infiltrates in my retinas, that’s why. Wonderful. I also learned that my father had lost his leg in a motorcycle crash when coming to the hospital in Houston to see me. He rode from Indianapolis to Houston to see me, and got hit by a Mustang a few miles from the hospital in downtown Houston. Nice, huh?
I spent about another week in the hospital before they let me go. They had me doing a little physical therapy because I had lost nearly ALL of my physical abilities while I was there, and they wanted me to be able to stand and walk to the bathroom before sending me out. I did a lot of work standing up and sitting down. I also did a lot of work with the throat folks. I essentially even had to learn how to swallow again. I was started on a liquid diet and as I progressed, I eventually made my way to a regular one. I still had a hard time getting the food to my mouth, but I could at least chew and swallow it once I got there. I was also given a spinal tap to see if they could figure out what that swelling was (they couldn’t do it earlier because of the pressure on my brain stem being so great, I ran the risk of rupturing it), and while they had the needle in my spine, they gave me some intrathecal chemo just in case.
Once they let me out, I still couldn’t go home yet. I had too many appointments for blood tests, bone marrow aspirates, chemo, and checkups. I did get to go home on a couple of weekends for a couple days, and that was nice. We rented a trailer home in Houston for awhile for this. It was SOOO uncomfortable, but it sure was cheaper than a hotel and better than driving back and forth all the time. The few steps up to the front door were great for my physical therapy. I eventually got to where I could walk up and down them without help. The trailer park was also a good place for me to learn to drive again. My car is a little Honda Fit with a manual tranny, so that was tough. I picked it up quickly, thankfully. My eyesight also improved some during this time.
Before long, I was able to go home on a more permanent basis. It eventually became clear that I was pretty stable, and my oncologist (Dr. Estrov is my hero) released me to an oncologist/hematologist at home, and permitted me to have my blood tests done at home. He still insists I go to Houston for my chemo and monthly checkups, but that’s better than daily or weekly trips to Houston. My wife at this point gave me permission to get a fancy home theater system. I call it my “cancer survival present” because I soon learned that my leukemia had gone into remission. I got a 40″ widescreen 1080p Samsung LCD HDTV, a Samsung blu-ray player that connects to the web to also access Pandora, Netflix, Blockbuster, and YouTube, a Yamaha surround sound receiver and speakers, and an upgrade in my DirecTV service to include HD broadcasts. I also got a subscription to Netflix since it’s so much cheaper than renting blu-rays at the video store. I certainly use it since I’m at home all the time.
At this point, things started to settle a bit. At first, my mother, my father, and my mother-in-law were all staying with me, helping me out. I still couldn’t use the computer well at this point. My coordination was no good. I also used a walker and a wheelchair. My parents bought my wife and I a loveseat to add to our living room (we had been planning to buy one anyway). My mom soon left to go back home, since she needed to start work soon. My dad and my MIL stayed awhile, but my dad eventually had to go home, also, because of the physical therapy he needed with his amputation. Eventually it was just my MIL. She helped around the house a lot by cooking meals and doing chores to help out my wife, since I couldn’t really do anything. She eventually went home, too, and my wife and I had to pick up on those things. I was at a point, however, where I could start taking up some slack so it all didn’t get dumped on my wife.
During this period, I settled into a routine of getting my chemo treatments, and then coming home to deal with the effects. I’m really lucky that I don’t get severe side-effects of the chemo. What effects I do get have been quite mild. I only lost about half my hair, which has since grown back. Any nausea I get is very mild. I do get diarrhea, but not severe, either. The frequency of my bone marrow aspirates also decreased, and so did my MRI frequency. I still had a little ‘spot’ on my brain stem that we still could not identify, so we kept an eye on it. Basically it showed up on the MRI as an ‘increased FLAIR response’, which indicated that spot had more fluid than other spots around it. I had no symptoms, and the spot never got bigger. Eventually, my Dr. told me that the spot is not of consequence and that its continued presence was partially due to the technique used to take the MRI. As far as he was concerned, the spot was nothing and that it would go away in time…and he was not scheduling anymore MRI’s to check up on it. Imagine my relief!
The opthamologist also kept up with my eyes. I ended up getting two more exams. The 2nd one did not show leukemic infiltrates, but it did show some hemorrhages, so he did not clear me to update my prescription yet. My 3rd appointment (about the same time as I got the report on that last MRI), the hemorrhages were healing, there was no new damage, and he cleared me to get new glasses. He wrote me the prescription (hehehe, I sneakily got an eye exam covered by insurance even though I have no eye insurance) and I got new glasses. That was really nice, as I hadn’t had new glasses in probably about 10yrs. I have one pair of old contacts left, but I can only wear them part time at the moment. Immediately after my chemo, I can’t wear them because I need to frequently take steroid eyedrops so the chemo doesn’t damage my corneas, but that’s okay for now.
Now, I only have two more chemo treatments left (out of a total of 8), and one more bone marrow aspirate. I really hope to return to my master’s program in the spring, but the timing of things is pretty tight. In August, I think, I got a septic infection when I went to the hospital for a ‘routine’ blood transfusion, and the fallout from that delayed my next round of chemo. Right now, it looks like my last one will be occurring around Christmas, which means my return to classes for the spring term will be close. My Dr. will not yet commit to any timeframe, so we’ll have to play it by ear.