Failed Diagnoses

By the time I finally got Carmichael diagnosed, my spleen was between 12 and 15 pounds. Here are the before and after pictures I took.

From Before and After

As you can imagine, I was happy to get that weight off. All it took was some chemotherapy, and my spleen shrank back to the slightly larger-than-normal size in the picture on the right. To give you some perspective, I lost at least 10 pounds in a week.

That being said, you might wonder how I came to have such a large spleen without realizing that something was wrong. Part of it was certainly denial. I had symptoms for such a long time, but I never really felt sick, and I wasn't really sure how serious the symptoms were or if I was just imagining them.

My symptoms began nearly two years ago. It started as a constant cough that wouldn't go away. After three months, and after my next paper deadline, I went to the doctor to find out what the problem was, and she told me it was allergies. I tried some allergy medication, which obviously did nothing. A few months later, I tried again, and they said allergies. They also checked for asthma and decided it wasn't that. After two more "second" opinions, I finally got a referral to a specialist. He looked at me for less than a minute and told me that it was asthma, and gave me a bunch of medication, which again did nothing.

I never could figure out what it was... until yesterday. I just realized that I haven't had to cough the way I used to even once since I left the hospital. My best guess is that it was due to the splenomegaly, that my spleen was pushing on my lungs, or something. So it took many attempts at diagnosis to discover Carmichael.

As for my other symptoms, there was the splenomegaly; I just thought I was putting on weight! I exercised a lot and even dieted a little to avoid it (which explains why I'm too thin now). There were also some swollen lymph nodes around my groin; this is what eventually prompted me to visit the doctor again, even though I have had swollen lymph nodes before that went away on their own. But really, other than that, I've felt very healthy! I was floored when I discovered how serious my condition was.

I also noticed a slight drop in my workout performance, and I had a lot of difficulty with my public speaking (I presented some of my work right before getting diagnosed), but I just chalked these things up to getting older and nerves respectively. It's just so easy to explain away each individual symptom when you can't see that they all relate in one big picture.

There were two other factors that delayed my diagnosis. The first I can only blame on myself. I have been so busy with work and research for the past two years that I neglected to take care of myself. I really hope that others will listen to me when I say that no matter how important your work seems, it is never more important than your health.

The second annoys me much more. Apparently Carmichael is typically identified through routine blood tests. This makes sense in general; it's much more common in older people who are probably more likely to be getting routine blood tests. But another way that it could be discovered would be through ordinary blood screening through a donation to the Red Cross. And I would love to donate to the Red Cross, but they don't want my blood. Well, to be fair, they shouldn't have wanted my blood... but they didn't want my blood for the wrong reason, because I'm a gay man. When I think of what could have happened because they are unwilling to take blood from gay people, it really makes me angry.

Well, despite everything, I DID get diagnosed, and I am still in the chronic (earliest and most treatable) stage of Carmichael. Things could be worse, but I also worry for others who might not be as fortunate to be diagnosed in time.

Prayer

I'm usually pretty lax about who I allow to be my friend on Facebook, and usually I'll just hide someone if their posts annoy me. Today I learned that it is possible to push me far enough to remove a "friend".

My sister-in-law, Anna, just got out of bible study. You know how I can tell? I just got a flood of messages on Facebook from people I barely know. Ordinarily I'm pretty good at putting up with religious folk; I know that religion is important to the rest of my family, so I try not to complain too much. One person in particular, who shall remain nameless, I've known for several years, from back when I tried to go to my brothers' church to try to understand their perspective better. Tonight she sent me a message on Facebook about something called "Gerson Therapy", an alternative to modern medicine in the fight against cancer. That pushed me over the edge, and I deleted all of these people who only I barely know and who obviously don't know me at all.

It's one thing to believe in God. I understand that. The existence of God can't be proven or disproven, and I can see how the thought of a better life after this one would be comforting to many people. On the other hand, I consider logic to be irrefutable, and I think the only way that you can truly believe in anything resembling the Christian God is to just totally throw all notion of logic out the window; you must be willing to accept contradictions if you believe in such a God. That is the root of the problem, and that is what really bothers me. When you reject logic, you're free to reject sound scientific reason, such as the theory of evolution or in this unnamed person's case, modern medicine.

I know that right about now, I am incredibly thankful for modern medicine, and am ecstatic that people devote their lives to developing new and better drugs. If I had met Carmichael ten years ago, I would probably be dead by now, because Gleevec is such a new discovery. When you think of things that way, the speed with which scientific discoveries are made is literally a life and death issue for some people. This person's rejection of science is the ultimate insult to me.

That being said, I can tolerate most religious people, but they do tend to annoy me. I can't tell you how many people told me that they were praying for me while I was in the hospital, but I can assure you that I found the number to be far too high. Prayer is absolutely meaningless to me, and these people know that I'm an atheist, so why do they say such things? I know it makes them feel better, but shouldn't I be the one that they comfort? Oh well. I guess I can handle the aggravation if it helps them feel better.

The biggest issue here was that I knew my family would want me to reconsider my beliefs in my new situation. Oddly enough, I expected it more from my brothers and sister-in-law, but they haven't said anything. It was my Mom and Dad who each tried to persuade me, independently. My Mom tried to apply Pascal's Wager; believing in God had to be better than not believing in God. After trying very hard to convince her of the flaws in that argument --- 1) that you could apply the same argument for other gods, 2) that ascribing infinite value to an afterlife and finite value to our earthly existence is an incorrect valuation for many people, and 3) that believing in God in such a selfish way is unlikely to work even in the event that everything people believe of heaven is real --- she was eventually satisfied when I finally convinced her that the notion of death being final and absolute was actually comforting to me because it makes sense. Apparently, she was more concerned that I was depressed than she was for my soul.

I think it's difficult for religious people to grasp that atheists aren't really afraid of death, and I'm not sure why. It's not like we believe that there's the possibility for an eternity of torture after we die. Death is inevitable; it's really just a matter of when it comes for you and what legacy you can leave behind.

I've Got Mail!

Today my labmate, Cristian, defended his dissertation. I've been working with him for several years, and in fact I'm a co-author on many of his papers, so I really would have loved to have been there for his defense. Instead, I was stuck at home waiting for the delivery man to deliver my Gleevec.

Here's the deal with Gleevec. It's actually really expensive at $100 per pill or so, and I, thinking I was a relatively healthy 26 year old, decided not to purchase prescription insurance. Fortunately for me, Novartis, the company that makes Gleevec, has a program for people exactly like me: less than 5 times the poverty level, less than $75,000 in savings, and no prescription insurance. I am incredibly thankful that they actually give me the pills for free! It's funny; I would be paying much more if I actually had prescription insurance.

In any case, I was approved for this program on Friday. Until today, I had been living off of medication the doctors gave to me at the hospital, and I could tell that they were running out of options for getting me deals on it. Today the delivery man delivered a month's worth of Gleevec. To my surprise, he also delivered something I ordered last week, a new pill box!

From Miscellaneous

I'm really pleased with it! I figured that since I'd be on pills for the rest of my life, I might as well have a convenient way of carrying them. I wish it were a tiny bit smaller, so that it would fit into my change pocket, but I really can't complain.

Fortunately, my deliveries arrived in time for me to catch up with the lab before they went out to lunch. On my way to the lab, I ran for a few minutes in order to catch the bus. As I was running, I suddenly felt a pain in my chest, and at first I thought it was my heart. My heart was pounding, way harder than it usually does when I'm exercising. But I eventually realized that the pain was a bit lower, and I think it was more related to the fact that I strained my muscles a bit carrying home groceries last night. For kicks, I tried running on the way home also, and felt it again. I'm definitely going to ask the doctor about it at our appointment on Thursday, and until then I'll try to manage my exercise routine carefully.

Despite being distracted by side effects, I was very productive at work today, and we all got to have fun at Cristian's celebratory lunch. Between my productivity this weekend with installing Ubuntu 9.04 and with my work today, I'm really feeling like I'm getting my life back on track, and that makes me really happy.

Racing heart

Well, I did manage to finish installing and configuring Ubuntu 9.04 last night around 5 AM. I think in the long run I'll be happy that I had to install from scratch. The system is running very smoothly and I'm pretty satisfied with it.

After finishing, I tried to go to sleep, and had a lot of trouble. I had been retaining water all day, and my legs felt very odd. Laying down was pretty uncomfortable, and I noticed my heart was racing. I was especially nervous since Ted wasn't around to help if I had a problem. I made it through the night, and Ted returned today.

Whenever my heart races, I can't help but feel nervous. Right now all of my blood cell counts are low, and I worry that if something did go horribly wrong that I wouldn't be able to tell that it was coming. This just makes my heart race more, so I had to really focus last night to calm down and keep a steady beat going. Eventually, counting my heart beats put me to sleep, and I made it through the night. Around 8 AM I got up and turned on the TV, then fell asleep again on the couch until 10:30. After that, I was fine, and a lot of the fluid retention was gone. I'm still retaining a bit though; I've been drinking a lot of water all day long, so hopefully that will help.

I'll try to give some updates on the progression of my blood cell counts after my appointment on Thursday. I will be very interested to see those results, and I hope that they've gone up from last week.

I need to do some work tomorrow; hopefully I'll finish cleaning up the camera ready version of my HotNets paper, I'll write my part of the quarterly report for the GeoMAN project, and I'll pick out and read a paper for Syschat on Wednesday. These all kind of depend on when my medicine arrives tomorrow; I'll wait until then to explain the deal with my medicine. In any case, I'm going to bed now to try to fix my sleep cycle. Goodnight!

Screwed up my sleep cycle

So I did something stupid last night. I decided that now would be a good time to upgrade from Ubuntu 8.04 to 9.04. As a result, I stayed up until 2 AM, and it still wasn't done.

Then the upgrade process was interrupted by a family gathering. It was nice to see the Baden side of my family, since I don't get to see them often and I hadn't seen most of them since I started hanging out with Carmichael. After our lunch together, I went back to my brother Billy's house and spent some time with my niece, Betsy, and nephew, Drew. We all (even the kids) ended up taking naps for whatever reason.

Fast forward to tonight. It's now 3 AM. I had a perfectly working version of Ubuntu 9.04 in time to watch Saturday Night Live, but I wasn't content... I wanted to clean my system up a bit. I ran baobab and noticed some file duplications. What I failed to notice was that during my upgrade today, I tried to install boxee, which involved a hack to run the 32-bit version, which created some hard linked directories... Long story short, I practically did rm -rf / (FOR THE LOVE OF GOD DON'T TRY THAT AT HOME), effectively ruining both all of the progress I had made and bricking my system. And people complain when GMail is down for an hour.

Fortunately, I didn't have anything too important on there... I'm mostly living in the cloud these days, after all. I don't know what I'd do with out Google. Cry, probably.

I'm thinking I'll just not go to bed tonight and instead take a nap in the afternoon. That should reset my sleep cycle, right? Ted gets back tomorrow evening, and he'll get to see my brand new side effect: fluid retention! It's pretty gross. My legs feel like plump hams right about now, and I have really weird things going on around the edges of my clothes. Still, here's to another day. :)

Side Effects

As I previously mentioned, I'm taking Gleevec. Gleevec is a great drug; unlike typical chemotherapy, it is specifically designed to target the problem cells that Carmichael is making. Of course, it comes with a fair share of side effects. I recently subscribed to the discussion board for Carmichael (he has his own BBS!) on the LLS web site, and unfortunately it's creeping me out a bit. People much further along than me are complaining about the side effects and their quality of life on Gleevec. Then again, they also thought the bone marrow biopsy was really painful, so I'm not sure that I can trust that their experience will be similar to mine.

Speaking of unspeakable pain, I've so far had three temporary side effects from my medication. The first was a rash, which I believe was caused by Hydroxyurea, a chemotherapy medication I was on immediately after diagnosis to bring my alarmingly high white blood cell count down from 430k per hundred mm cubed to a safe 4k-11k. I'm off the Hydroxyurea now, thankfully. Another "side effect" is that Gleevec is preventing me from regrowing some new (albeit cancerous) bone marrow cells, so I'm currently just plain low on bone marrow, which also means that I'm low on all of my blood cell counts. This means I'm slightly anemic, and a little tired, and more importantly, low on platelets, so when my vicious cat Shabby attacked me this evening, I actually bled much more than usual and ruined a sock.

However, those side effects pale in comparison to the third one which I experienced three days ago. I woke up to my new gift in the morning, an excruciating pain in my left toe. After hobbling to a bus that took me to UMD's health center, I was quickly diagnosed with gout, which my third medication (allopurinol) was supposed to prevent. One day and a few painkillers later, it mostly went away, and now I only feel it if I try pretty hard. Interestingly, I don't remember the pain much now, only the certainty that it hurt more than anything else I'd ever experienced. I remember a similar experience when I accidentally stabbed myself in the eye with an umbrella as a child. I got through that pretty easily and realized that when things are really painful, my brain is really good at shielding me from that pain, and for that I am grateful. By the way, to get through my bout of gout, we gave it a nickname too: Gary.

As for other side effects, who knows when they'll strike? One of the most annoying things about Carmichael is that I'm now constantly questioning anything I feel. Did I feel like this yesterday? Have I ever felt this feeling before? Even if I haven't, is this just a normal feeling that's unrelated to Carmichael? How can I tell if something's serious, and what do I do if I mistake something as being minor even though it's dangerous for me? I guess these are just the questions I need to deal with, but still, I think I'd feel a bit better if my boyfriend, Ted, weren't gone to a family reunion this weekend, leaving me home alone for the first time since my diagnosis...

Introduction

My name is Randy and I was recently diagnosed with Chronic Myelogenous Leukemia (CML). Like, really recently. As in three weeks ago. As it turns out, modern medicine is well-equipped to deal with what was not-too-long ago considered a deadly form of cancer. I took my initial diagnosis pretty hard, since I just heard "leukemia" and immediately thought, "I'm probably going to die... sooner rather than later." Thankfully, my prognosis is actually not bad at all, and with the help of my little friend (a 400mg daily dose of Gleevec) I will continue to live a long life supposedly fraught with a few side effects here and there.

I admit, despite my boundless optimism and sunny disposition, I sometimes idly have dark and depressing thoughts (though you might not know it if you weren't reading this blog). However, I've decided to focus on positive thoughts. This blog will most likely blend the good and the bad, but for the most part I expect to just deal with the bad and focus on the good things that have come of being diagnosed with CML.

I think most of my friends and family (and even strangers) have actually taken my diagnosis harder than I have; hopefully I'll get to that at some point. :) But my really close friends, the ones who understand me the most, really understand my attitude and are definitely with me on taking CML in stride and having fun with it. To that end, we've even given CML an affectionate name: Carmichael. I like to think of Carmichael as a friend who will never leave me. Even if the doctors kill him, his memory will live on in me, and that means something... I guess. :)