Day 10: The Sickening

Well, to those of you who have been following me, you've probably noticed some sizeable gaps between posts lately. Candidly, the past 3 to 4 weeks have been pure hell. Although the first two cycles went swimmingly, the periods following cycle 3 and cycle 4 saw me get progressively sicker as I left the hospital. By about a week out, I was in such bad shape that I ended up back in the hospital for about 5 days each time. Basically my life had turned into an episode of House, M.D.

But after noticing that each time my white blood cell count was around 0.7, my doctor ended up with a diagnosis of neutropenic enterocolitis, which is to say a massive colitis flareup brought on opportunistically by my near nonexistent white blood cell count. I'm very lucky, as this condition can be fatal if not treated, but it's also easily prevented. The simple solution is for me to boost my WBC count through the heaviest concentration of my chemo with regular shots of Neupogen. For me, this is through day 10--meaning 9 days after the start of my chemo--which is also the day when my chemo reaches it's peak concentration. After this point my body can take care of the rest.

But there is a very serious lesson here for chemo patients, and especially anyone who also has another condition like me: know when your chemo is at it's strongest and expect that if you have any other conditions that they will be exacerbated during this period. Fingers crossed, I'm feeling loads better, so hopefully I can get back to a regular schedule now. Stay tuned!

Oh! Hi there, Chemo Round 3...

Last night I felt the full gravity of what my doctor meant when he said, "We are going to treat you aggressively." Backing up a bit, I should note that most of the pain I have had up to this point has quite manageable, either through exercise or pain medication. I think to some degree I had the misconception (even though I know better) that as the cancer dissipated, the pain would also. But when you think about it, that doesn't make a lick of sense.

The thing to consider here is that, however abnormal, the tumors have in fact become a part of my body. Killing them, as the chemotherapy is doing, is really no different than surgically removing any normal part of my body, like a muscle or a piece of intestine. And the pain you might expect with such a procedure is very similar to the pain experienced during effective chemotherapies.

So to some extent I am relieved. At least I know it's working. The primary tumor, located in a lymph node on the right side of my neck, has all but dissipated, and I have minimal to no lymph node involvement anymore, which is a very good thing for lymphoma to be sure. But, as is common with blood and lymph cancers, my own cancer metastasized to my colon, as well. That tumor--which doctors refer to as a metastasis(es)--seems to be the last one to go, and because of its location in a physiologically active area of my body, I'm REALLY feeling it. For the time being, my only option is to manage the pain through pain medication, which believe it or not is only mildly effective here. But I'm also of the mindset that it's only temporary, and if anything it has made me more anxious/excited to see the results of my scan, which will take place prior to the fourth treatment. I'll be sure to share as soon as I know anything...

How's this for a Hootenanny? Health Roles, Statistical Significance, and The Meaning of It All

First of all, I apologize for the past few post-less days... but they've been a busy few at that. By the time I got home from the hospital on Monday, I had little to no energy to do much of anything but lay on the couch. This was, however, incredibly therapeutic and relaxing, and I encourage my fellow cancer patients to do it often. Tuesday was busier and involved a lot of tidying up, unpacking the hospital bag, and catching up on a dizzying amount of e-mails. Don't get too far behind in your personal and professional lives when you're going through treatment, as it helps to be able to think about something besides cancer. Finally, today I decided to go into the office, and this decision warrants a bit of explanation vis-a-vis the sociology of health.

Roles, Behaviors, and Health
Although I'm a social statistician now, my training is fundamentally as a sociologist, and one tenet of sociological theory involves the importance of "roles." Roles are pretty self-explanatory, but they capture the various social positions we occupy and the behaviors associated with or expected of them. It is tempting when you're going through something like cancer to be singularly focused on the role of "cancer patient." This is understandable, but problematic, because we also know that fulfilling multiple roles and role behaviors is correlated with a more positive self-concept and better health. Put another way, focusing too much on your treatment might actually hinder your physiological recovery... it's true!

Thus the lesson here, and one which seems to be panning out quite perfectly in my own situation, is that we (by "we" I mean all cancer patients AND their support networks) should recognize the time and place to be focused on treatment, and thus also when to forget about it for a while. I'm not suggesting we go all Marco Polo on it and start traveling the globe, but a few simple tips can help you keep balance in your life, and promote the feeling of "wantedness" or importance that leads to greater self-esteem and improved psychophysiology.

1. Keep at least an hour a day set aside for doing something "hobby-like" that you enjoy. For me this is definitely blogging, but it also includes cooking and baking. 
2. Whether personal or professional, keep up at least on checking and responding to e-mails. It assures your friends and colleagues that you're doing well, and it feels really good to stay "in the loop."
3. Spend some time outside, like in your yard or on the deck, but stay close to home. Obviously we need to be careful about going out too much, because of the risk of infection, but when it's nice out, the fresh air and sunshine can be marvelously healing and is a beautiful counterpoint to the dank, stale air of hospitals.
4. Exercise, a little bit. DON'T go to the gym, but I've found a few rounds of going up and down the stairs slowly is actually very refreshing. It also helps to release endorphins, which stimulate the product of hormones that promote healing.

Statistical Significance and Effective Chemotherapies
Okay so this is definitely a bit heady but involves a funny story. My regimen (DA-EPOCH) involves adjusting upwards the initial dose of the primary drugs by 20% each treatment cycle, to a total final dose equivalent to twice the original dose. Blah, blah, blah, I know. But being the consummate nerd that I am, I actually read the literature on this regimen and follow the course of my treatments very closely. I had noticed this past cycle that my daily infusions were taking longer than 24 hours (upwards of 27 to 28 hours, in fact), which made me wonder whether I was, in fact, getting the precise dose associated with the statistical awesomeness of this regimen. I pointed this out to the nurse, who pointed it out to the pharmacist, who pointed it out to the doctor, who agreed that I had a point (he really doesn't know what to do with me, lol). The problem was that the increased mass of the larger doses of chemo displaced the total volume, which was not being factored in to the infusion rates. The solution was to turn the rates up, to ensure that the drugs were delivered over a strict 24-hour time frame. OKAY: here's the point... BE INVOLVED IN YOUR TREATMENT.. the best way you know how. It gives you a feeling of control, and trust me, healthcare professionals prefer patients who work with them on getting you better.

The Meaning of Things and the Power of the Human Will
This might be a bit metaphysical for some people, but I must confess that despite being a hyperrationalist, I actually follow horoscopes pretty closely. I'll be the first to admit that a good portion of the whole horoscope thing is pretty much hokum. Nevertheless I find them to be thought-provoking, and they help me to stay more deliberate in the words I speak and the actions I take. Sometimes they don't make a whole lot of sense, but I like to find meaning in them by way of what transpires throughout the day. The sum total of this process has led me to believe that whether or not everything really does happen for a reason is irrelevant, because ultimately things can happen for a reason if you give them one. This year has accumulated some pretty intense life experiences for me, to the point where I have come to believe that this year represents a radical turning point in my life. Prior to getting treatment I had almost accepted that I was going to die... I knew something was wrong, but like so many people I was scared to the point of atrophy, and figured that if I didn't find out what was wrong, that maybe it would just go away. But once I started getting treatment, the realization that death was not imminent was followed by a showering of blessings and opportunities in both my personal and professional life. It's strange to say, but there's almost a bit of fear in this new phase of my life, since it feels like everything I knew no longer is, and everything that will be is newly rewritten. But it's also incredibly freeing, because it means that from here on out, I understand that the path my life takes really is the result of the decisions I make in my life, and this has led to a new determination to stay healthy, positive, and balanced.

Steroid Dependency: A Serious Conversation I Think I Might Be Having Soon

Prednisone is a steroid used to treat everything from asthma to colitis. It's also used frequently in chemo regimens because it depresses immune system responses thus allowing for the cytotoxins (chemo drugs) to do their job without interference. A typical dose is between 5mg and 20mg, taken on and off at regular intervals. And put simply, it makes you feel like could clean your entire neighborhood in one day. Now imagine that, while in the hospital, I'm on 240mg of the stuff EACH DAY! Oh my god, my family. At the very least, they've eaten well, because I've been inspired to make some off-the-wall down-right-gourmet meals while on this stuff. But for all the benefits prendisone offers, it is similar to nearly every other prescription-only drug in that you run a high-risk of developing dependence on it.

If you are on prednisone for longer than a week or so, as I am, your body begins to shut down production of its own natural corticosteroids, and if you stop taking prednisone suddenly, you can develop serious kidney problems. This is why you are usually tapered off the steroid over the course of several days. But because prednisone introduces such a rush of corticosteroids into the body, eventually your body might just stop producing them anyway, leading to steroid dependency. If you taper off the drug while you are steroid dependent, get ready for a bumpy ride. On top of it, because I have colitis at the moment (and perhaps permanently), I almost always get a flare-up on the last day or two of the taper, and afterwards I basically have no digestive comfort until I go back on the prednisone. If it turns out, after my chemo is completed, that I still have colitis, I will likely be on prednisone on and off for the rest of my life. But if not, I'm a bit worried at the moment about how I'm going to manage getting permanently off of it. Thus, I will be having a serious conversation with my doctor soon, and if you begin to notice symptom development around the time of your own taper, I'd suggest you consider having this conversation too.

Scanxiety: Yup, It's a Thing

And I got it. Let's break it down. Scan. Anxiety. Scanxiety. Got it? If you're still scratching your head, this is the general nervousness cancer patients feel when approaching the date of one of the minimum two PET scans that will be done to confirm that the tumors are shrinking. I feel pretty confident that the scan is going to go well, but I'm nervous nonetheless. What I'm trying to do to manage these feelings is resort to the more regular information I get related to my health, namely my bloodwork results, and they have been remarkably good. Additionally, my lymph nodes have shrunk considerably, so the point here is that I'm likely to hear that the tumor has also shrunk. The question is how much? Then again, I'm not quite at the halfway point of my regimen, so I know I shouldn't get too worked up.

I also feel a bit ambivalent about posting my own good news, given that I'm sure there are bound to be other cancer patients reading this eventually, and not all cancer patients will have reason to be so optimistic. For my own sense of fairness, I'll try to balance any good news I might get with suggestions I have for people on the flipside of any particular issue. With respect to scanxiety, I think, as I said before, that it's critical to rely on the regular information you get about your health, as well as your general physical well-being. In other words, if your bloodwork hasn't been so good, and/or you're just not feeling great still, try to tamp down your expectations of what the scans might tell you. Maybe it is cliche, but it's more difficult to get disappointed or frustrated if you have more limited expectations to begin with. AND THEN, always stay positive! It's just a proven fact that psychological well-being has a direct effect on your overall physiology: positive people simply heal faster. And also try to remember that you might actually feel worse while you are getting better. Chemotherapy, contrary to what the name implies, isn't very therapeutic... it's poison. But it does its job and while it is, you're gonna feel like crap. Especially if your regimen is anything like mine, which in case your curious, is:

DA-EPOCH Regimen
The Dose-Adjusted Etoposide-Prednisone-Vincristine-Cyclophosphamide-Doxorubicin (with other names, abbreviated EPOCH) is probably one of the major breakthroughs in chemotherapy development, especially for the treatment of lymphomas. Unlike the old CHOP regimen, which had about a 50/50 chance of working, my regimen started me at a baseline dose during cycle one and then increases the concentration of the three main anti-cancer drugs by 20% for each cycle. As long as I respond well, my final dose will be 2.2 times the original dose given during cycle 1. If you have lymphoma and are being treated with DA-EPOCH, you can relax a bit. It's almost certainly going to work. What remains unclear, however, is whether or not the cancer comes back. As with all things, staying positive (though simplistic), is just the best possible therapy for a cancer patient, and I'm doing my best to take a bit of my own advice.

By the way, if you've read my blog and have any comments/questions, please please please send them to me. You can either reply to a particular post, or shoot me an e-mail. I would just love to hear from you.

How's this for a Hootenanny? Appointment Days, Life, and the Problems of Pain and Prednisone

Well, my blog is actually starting to get a little bit of meat on its bones now (and a bit of traffic... thank you readers!), and I realized that I have yet to post anything experientially-related to me; in other words, I haven't really shared any thoughts or updates about my feelings or general well-being. And not that I would presume to think people are biting their nails waiting for this, I probably should... at least insofar as blogging can serve as a form of therapy for managing stress and emotions. The occasional uber-personal post (and not just "advice") might serve to make me a better, well-adjusted blogger. And again, if you are reading this, thank you so very, very much. This is quickly turning into a pet project of mine, and it has been wonderful and thrilling to enter the world of blogging. I don't think I'll ever turn back. That said, this is a "hootenanny-post," probably the first of many, many more, wherein I make up for lost time and throw together a hodge-podge of topical highlights. And to some extent this reflects the general course of my life and the life of a cancer patient, at least this week anyhow.

Appointment Days
If you have cancer and haven't had one of these yet, get ready for it. It's like an Aristotelian confluence of events, wherein ALL of your regular follow-up appointments happen to occur on the same day... I call it a medical marathon. :) It pooped me out, big time. But luckily, all was clear. At the moment, however, we are dealing with a bit of diagnostic uncertainty related to my gastrointestinal well-being, and it's messing with my head. To explain, I have metastatic lymphoma, with the main metastasis being located in my colon; the side effects of this have my doctors uncertain about whether I might actually have ulcerative colitis. I have many, if not all, of the symptoms, but the question that remains is whether there is an underlying gastrointestinal pathology, or are the inflammatory symptoms simply a response to the colon-based tumor I have? Frankly, I'm praying that I DO NOT have UC; the long term outlook is simply better if my symptoms are more cancer-related. I'm sure I'll be blogging more about this near the end of the summer when my primary care responsibilities switch more to my GI.

But other than that, it was somewhat smooth sailing. My cell counts were good and my LDH was normal. If you have been diagnosed with cancer, you'll need to keep an eye on your LDH: the lactate dehydrogenase assay tests for cell damage, essentially, wherein a high LDH means more cell damage, ergo more cancer. Normal LDH means the cancer is going away. Within reason and with a humble attitude, I'd suggest learning about the essentials of your care so that you can be more informed about your health and know what questions to ask your doctors when you visit them. For me, for this week, it was my GI, oncologist, and dressing change for my PICC line, after which I had a little bit of...

Life
Hey, it happens. And it's most definitely better than the alternative. Although treatment is becoming a more integral and demanding part of my life with each passing day, I have decided that I'm also not going to let cancer barricade me in my house while the world goes on around me. As I get deeper into treatment, I am fast realizing that I do need to be selective about what gets me out of the house, when, and for how long. This week it was graduation at the university where I teach, and although I left a bit early, I needed and wanted to be there. More generally, however, I'm beginning to think that I will want to cluster the events and work responsibilities I engage in around the week following each treatment, when I'm on prednisone. Prednisone can be a fussy drug to manage, especially where the general hyper-ness is concerned, but notwithstanding it does give you the energy and mentality to feel and act somewhat normal. As I get closer to another treatment and take less to no prednisone, I feel increasingly more intense amounts of...

Pain
Cancer pain is so strange. It will happen for no apparent reason, and the sensations it produces are just... well, strange. At times it feels like having a cold, but without the cold; it's a general achiness without fever or other common symptoms. And then there are times, like the past day or two, when it borders on unbearable. I never go anywhere (even in my house) without my pain medication, because intense pain can hit me without any warning. I have somewhat mixed feelings about my pain meds, though, considering my history. But if I've made any substantial psychological progress since my days as an addict, I've come to the realization that those days are behind me, and, right here, right now, I have the right to not be in pain. If you have cancer, you have the right, too. If you get a new pain medication and it's not working, call your doctor. Don't be a hero, it won't help you get better.