A quick look at my home node will show you that I've not been a particularly active contributor to this site for a number of years. There are a lot of reasons for that but chiefly it's because I got lazy. However, I still log on and read the new writeups fairly frequently. Today I logged on and saw the Everything2 Memorial Node. It's not a very long list but it casts a long shadow. A (possibly) disproportionate number of names on that list are there because of cancer. I have cancer as well. To say that it struck a chord with me would be an understatement. It occurred to me that while I've been living with this for a while, I haven't really processed it or talked about it on anything but the most superficial level.
I was really excited last year for Halloween. My daughter hadn't really understood the concept of Halloween in the last couple of years but by that point she was old enough to get the idea of dressing up in a costume, knocking on a door, saying "twick or tweat!," and getting free candy. She was the cutest Minnie Mouse I'd ever seen in my life. She was ready to do this. I thought I was too. The first part of the walk around the neighborhood was all right, but about halfway through, I felt like I was going to fall over. I could barely breathe. I had to sit down for a break while my wife and my mother-in-law took her on ahead and I had to catch up to them. By the time we got back home, I was panting like a dog.
I've had high blood pressure for virtually my entire life. It was never treated, though. I hated going to doctors and I could count on one hand the number of times I'd seen a doctor in the previous 15 years. But after my dismal performance on Halloween, I figured it was time. I got set up with a primary care physician for the first time in my adult life and told him what was going on. I got prescriptions for a beta blocker and Wellbutrin, the latter of which was supposed to help me quit smoking and possibly address my depression. I slowly started to cut back on my smoking, which was good, but the breathing problems stayed the same. For Thanksgiving, I couldn't move around long enough in the kitchen to cook anything beyond my green bean casserole that I still can't tell if people in my family actually like or are just being polite when they say they like it. But whatever, I just figured it was my body getting used to the new medicines.
I also started to notice around this time that my clothes were hanging a little loose on me. Now I've never been what you might call "overweight." I'm over 6 feet tall and the most I've ever weighed was about 210 pounds; my baseline weight was probably closer to 175. I don't have a scale in my house, though, so it's not like I check my weight very often. But I could tell I had lost weight. A followup with my new doctor confirmed that; I had lost probably 8 pounds over the course of the month. Well, ok, I'd cut back on a lot of the junk food I used to eat and I was sort of trying to control my portion sizes, so maybe that's all it was.
Between Thanksgiving and the first week of December, I started having a hard time sleeping. Sleep has never exactly been easy for me for whatever reason, but this was out of hand. I couldn't lie flat on my back without horrible chest pains. I had to use 4 or 5 pillows to prop myself up in a position "comfortable" enough to get to sleep although I was effectively just sitting up in bed. Even then I would still wake up constantly throughout the night coughing and in great pain. This scared me because my father is the same way and he has congestive heart failure (along with a ton of other health problems). My grandmother on his side died from complications arising from that same condition. My grandfather on my mom's side died from a heart attack. I thought I was about to have the same thing happen to me.
After yet another largely sleepless night, I went to work, but I couldn't focus. I was dizzy, out of breath, and on the verge of a panic attack the entire day. I got nothing accomplished. My heart rate hovered around 150 for most of the day. I called my wife shortly before I left and told her that I was going to come home, change clothes, and go to the emergency room. The last time I'd gone to the ER was about 9 years prior to that: it was a few days after I was in a car accident and my back was in horrible pain.
Well, considering my symptoms -- chest pain, difficulty breathing, and an obscenely high heart rate -- it did not take very long for me to be seen at the ER. They put me on a heart monitor and then they gave me an EKG. Then a chest x-ray. The hospitalist came in and told me that it looked like I had pneumonia or a blood clot but that they would know more after I got a chest CT.
So then I got a chest CT. That was an experience; laying flat still caused me a considerable amount of pain and getting into position for the scan was a nightmare. And then I got to wait. And wait. And wait. My wife arrived at the hospital after finding someone to watch our daughter. Not long afterward, another doctor came in and asked me for a recitation of my symptoms, when all this started, etc. I'd already told this story about 5 times prior to this, so I did it again. And he had this awkward look on his face and asked me a question I'll never forget: "has anyone ever told you that you have a whole bunch of swollen lymph nodes in your chest?" I knew what that meant.
"Uh...no, nobody has ever told me that. I haven't been to a doctor in a long time."
"Ok. Well, usually when we see this, it's because of some neoplastic process like lymphoma or lung cancer."
"We'd like to admit you and do some more tests."
"All right. Um, sorry to be the bearer of bad news."
Needless to say, that wasn't a great night. I got admitted and barely slept. I threw up. I learned the next day that I had a condition known as cardiac tamponade, which is where there is so much fluid built up in the sac that surrounds the heart, it actually pushes onto it and disrupts its function. It's typically seen in elderly people with advanced forms of cancer. I was 32 years old at the time. They had to drain the fluid from my pericardium in a procedure known as pericardiocentesis which involved me getting a needle shoved into my chest mere millimeters away from my heart while I was wide awake and restrained in a bed. Yeah, that was uncomfortable.
So as I'm recovering from this, I learn additionally that I have massive pleural effusions, which is where the pleural sacs surrounding the lungs are filled with fluid. I had to have another procedure called thoracentesis to drain this fluid from around my lungs with the needle going into my back this time. By the way, if you breathe or cough too hard during or after this procedure, your lungs could collapse. No pressure or anything.
I won't bore you with the details of the rest of the visit there except to say that I stayed for a little longer than a week and I got to be something of a hospital celebrity. Everyone just had to come see this young guy suffering from ailments that typically affect people in their 60s and 70s. I must have talked to a specialist from every department in the hospital. The tech who performed my echocardiogram was about my age and she let me know how much it freaked her out that she was doing this imaging on someone so close to her own age. Thanks! I felt like a corpse when I was discharged and I looked like one too; I discovered that my current weight was less than 150 pounds, the least I'd weighed since high school. The worst part, though, was that I was discharged without any definitive clue as to what was wrong with me. I had a million follow-ups with a million specialists, most notably the pulmonologist I'd met in the hospital, an absolutely humorless man with no conception of punctuality.
I had to have a lung biopsy. The leading contenders for my condition were lymphoma, lung cancer, germ cell cancer, and sarcoidosis. Lung cancer was considered unlikely since fewer than 5% of lung cancer patients are under the age of 50. Sarcoidosis was also considered unlikely, again due to demographic reasons (I am neither black nor female). The lung biopsy came back negative, meaning that I didn't have lung cancer. This was at least somewhat good news since lung cancer is one of the deadliest forms of the disease with an incredibly poor prognosis.
Unfortunately, I continued to experience pleural effusions pretty regularly. While the cardiac tamponade has yet to recur, I've probably had about 6 or 7 pleural effusions with the associated hospitalizations and drainings. It was not until February following yet another biopsy that I finally learned the underlying condition causing all of this: Hodgkin's lymphoma. Based on a PET scan and the symptoms I was experiencing, it was staged as IV A - it only goes up to IV B. My new oncologist let me know that it was imperative that I begin chemotherapy as soon as possible. I had to have another surgery to implant a mediport into my chest. For those who don't know, a mediport is basically a device that saves medical staff the trouble of trying to find a vein through which to administer chemotherapy because it's already connected to the vein. I started my chemotherapy a few days after getting the port.
Even if you've never had cancer yourself, you probably either know someone who has gone through chemotherapy or you've heard about it. The written word does not do it justice. Chemotherapy is different for everyone; the type of chemo you get is based on the type of cancer you have as well as any other health issues you might also have. The type that I get is called ABVD and it is the preferred form of treatment for the type of cancer I have. It's called ABVD because it's comprised of four drugs: Adriamycin, Bleomycin, Vinblastine, and Dacarbazine. I have to go in once every two weeks for my infusion, which is supposed to take about 3 hours; in practice, though, I wind up spending most of the day there because even though I have an 8:00 AM appointment, the session might not start until 11:00 for various reasons.
Going into the infusion suite is a difficult experience for me. I am routinely the youngest patient there by at least 20 years. I feel angry and frustrated because I feel as though I'm being cheated out of something. I'm supposed to be in the prime of my life right now; this sort of thing isn't supposed to happen to me until much later. I should be taking my wife and daughter out to the beach or to the zoo or whatever. Instead, I'm sitting here, getting poison injected into me. It wasn't supposed to be like this.
But then I have equally intense feelings of guilt over thinking that way. There's no "good" form of cancer, but as far as survivability goes, Hodgkin's lymphoma is one of the least worst types to have. It is a highly treatable cancer compared to lung cancer or brain cancer or breast cancer. I know that the bulk of the people in that room with me are being treated for cancers that fall into that second category. Partly due to their more serious diseases as well as their advanced ages, they do not have anything remotely approaching the chances for successful treatment that I have.
Then there's the feeling of sadness I have when I look over and see these people old enough to be my grandparents all alone there. Every chair in the infusion suite has another chair next to it for a friend or loved one to sit in while the patient gets their treatment. My wife almost always comes with me to mine. Most of the guest chairs are empty, though. I'm guessing the bulk of the patients are widowed or their spouses have their own health issues that prevent them from coming. Of course, it's rare to see either their children or grandchildren there with them. I'm sure of course there are some who have neither children nor grandchildren in the first place, but even that's depressing too: imagine reaching your 70s, becoming afflicted with a terrible disease, and there's nobody to comfort you or help you through a very dark time.
Like I said before, chemo is different for everybody. While mine takes forever, some people might be in and out in less than an hour. Some people have to get it more or less frequently than I do. The side effects vary in type and intensity as well. Stereotypically, the most common side effects you hear about are hair loss and nausea. I can confirm that I'm experiencing both of those. The hair loss started after my second session. Specifically, massive quantities started falling out in the shower. After my third session, I shaved my beard and most of the hair on top of my head. I lost hair in other areas as well. While some of it has started to grow back, not all of it has, and the hair I am gaining is weirdly soft, thin, and light.
As for the nausea, yeah, that's a big one. I take two anti-nausea medications at home and they give me two other ones in the infusion suite before I get the first of the ABVD medicines. Even that isn't enough because I'll still throw up with little to no provocation. Fortunately, it's not like the nausea is a 24 hour a day thing, it's just that when it hits me, man, it really hits me.
One side effect you don't hear much about but which is apparently really common is the impact that chemo has on your sense of taste. In the four or five days immediately following a chemo session, nothing tastes right. There are very few things I have any desire to eat in those timeframes. So much of my sense of taste is lost; I would be hard pressed, for example, to tell the difference between potato salad and banana pudding in a blind taste test. With soda, I can only taste the carbonation. Tasting salt is iffy. Almost all bread tastes like moldy cake. I have to have food that is simple in taste and texture during these times. The main things I can eat without feeling absolute revulsion are barbeque pork, sloppy joes, vanilla ice cream, and cinnamon toast. Scrambled eggs are hit and miss. For the most part, I don't really feel like eating anything at all but I know if I don't, my body will eventually just shut down, so I slog through each meal. Since my taste gradually returns, it's usually not a big deal for more than a few days, but it's still really not fun.
Of course, there's also the fatigue, the weakness, and the pain associated with all of this. I haven't worked since my initial hospitalization in December and I've already missed two goals for the dates at which I was supposed to go back to work. But everything absolutely exhausts me. A 30 minute trip to the grocery store will wipe me out for three hours afterward. I get worn out from talking for too long. I need to sit down and rest after taking a shower. This is pretty much a constant feeling and it's compounded by the fact that everything just hurts. My chest hurts. My back hurts. My hands and feet hurt thanks to neuropathy. My oncologist, who is otherwise great, severely underestimates the pain I'm in and writes me a prescription for a painkiller on a monthly basis using the same dosage that the hospital prescribes for a week.
Since I'm not working, I'm broke. My wife has a part-time job and we've gotten some money here and there from family and friends, but it's not enough, unfortunately. This was the thing that always scared me the most about having a serious illness: living paycheck to paycheck is bad enough, but even that shitty system kind of breaks down when there's no paycheck. I feel like a failure constantly and there have been times where I've been tempted to stop my treatment and just go back to work for as long as I can before I drop.
Then there's the boredom. I can't go out. I can't work. I can't really do anything fun to speak of. I essentially have become a living extension of my couch. And it was all right for the first little bit; I didn't mind a month or so of not having anything to do (other than doctor's appointments). But you can only play so many video games, binge watch so many shows, and read so many books before you start to lose your mind. I'm there.
I am scheduled for 12 sessions of chemo and I've been through 8 so far. After my 6th session, I had another PET scan done, which revealed an excellent response to the treatment. So, good news. But the response wasn't excellent enough to stop treatment, so I still have 4 more sessions, followed by presumably another PET scan and possibly radiation therapy. I've gained back most of the weight I'd lost. My blood work looks good. Things appear to be getting better, but I don't really feel that much better. I'm told it could take a few months after the end of chemotherapy before I've "recovered." Hopefully it doesn't really take that long. We'll see.
As I'm sure you all can guess, this has been a very difficult experience for me. I hate feeling like this. Even though I'm more than halfway through my treatment, it's still hard to see a light at the end of the tunnel when I get out of bed every morning feeling like someone hit me with a shovel. I've known a handful of people who've had Hodgkin's and their experiences were pretty similar to mine, so at least I know I'm not getting it any worse than they had it (with the exception of the constant pleural effusions). All I can think of is that I've at least got it better than a lot of other people but even that train of thought kind of makes me feel like shit because it naturally leads me to think "oh, well, I should be doing more!" even though I really can't.
I'm not very good at endings, so I'll quit while I'm ahead and say "to be continued." I hope.