Apologies for a Few Days of No Posts (or Energy)

I suppose that even if none of my readers mind that much, I do mind when I get behind on posts. It gives me a certain sense of structure and control to post regularly to this, my precious little project. And if you've followed any of my progress, you'd know that so far my treatments have panned out in a stellar fashion. This one felt different, however. We celebrated a family member's birthday over the weekend, and I felt pretty good preparing a nice meal of pan seared scallops and flounder, 4 cheese macaroni cheese, stewed tomatoes, and red velvet cake (stay tuned for an upcoming twist to that recipe here). But roundabout Sunday night, I just started to feel tired.

Certainly part of it was just the lack of sleep (thank you, prednisone) catching up to me. And sure as sugar, when I got home from the office on Monday I fell asleep on the couch and proceeded to sleep until about 6am Tuesday morning. That alone made me feel a LOT better. But my doctor also called this morning and told me I needed to get Neupogen because my white blood cell count had dipped very low. By the way, I found out that my insurance fully covers the ludicrously high $3000.00/shot cost of this medication, for which I am inexplicably relieved considering I need two more this week. But I'm not too bummed about this whole situation, because so far I've been very lucky. I expected that at some time things might not go exactly perfectly. There's also an encouraging possible explanation for the WBC dip in that there may just not be much cancer left, sending the chemo to take a relatively higher toll on my immune system than it has so far.

Anyway, I'm feeling better and should have many more posts added over the next day or two. I'm just keeping in mind--as anyone should really--that the downs in life only help me to appreciate the ups that much more.

On Best Friends Day: An Aristotelean Confluence of Events

Aristotle (although I am, by no means an authority here) spoke about the driving process of the universe as the occurrence of impossible probabilities. That is, or at least this is what I take from it, each of us live our distinctly individualized lives because a series of probable events often occur (impossibly) at the same time, therein making similar experiences lived quite differently for different people.

Earlier this week I made plans with my best friend's mom to continue working on an advocacy project related to chronic depression awareness. You may have read elsewhere here that I lost my best friend of over 20 years to a crappy fight with chronic depression, although that is the extent of detail I will share for now. It just so happens that the very day I am planning to do this turns out to be "Best Friends Day." Now, I don't know who makes these days up, but I like them and I just go with it. But I find it all a bit eerie, and it seemed post-worthy.

The thing about chronic depression, for that matter all of mental health, is that it occupies a distinctly different place within our understanding of health. We often minimize mental health problems as if they are somehow optional; at best, mental illness also rarely presents itself in a recognizable way in the sense that a cancer patient (like myself) is easily identified. And depression is also a highly social problem, as it often involves near paralysis on the part of the depressed resulting from perceived, albeit nonexistent, reactions from others. My best friend's mom (who I call mom as well) has a beautifully simplistic way of putting it: "If there is something wrong with your heart, you can get a new one, but if there is something wrong with your brain, you can't get a new one of those." So herein also lies the message of this post: if someone you know is going through depression, take them seriously, and if you care about this issue the way I do, look forward in the future to me sharing some of the results of the advocacy work I'm beginning soon.

Nationwide Drug Shortages Hit WAY Too Close To Home: The Curious Case of Vincristine

Roughly a year ago, media outlets began covering the news of widespread chemotherapy drug shortages in the United States. At least one of driving interests in this news was the fact that these shortages are disproportionately impacting children and women. One of these drugs, vincristine (a.k.a. oncovin), is among the most frequently short-supplied chemotherapy agents, and is used prolifically in the treatment of leukemia and other blood-related cancers. You think about this and, certainly, anyone with a pulse would be moved to empathy, but probably in a quite disconnected way. You just don't realize how important a regular supply of these drugs is until, like the situation I found myself in during my third round of treatment, the pharmacist informs you that one of your life-saving drugs is not available. Of the four days I was in treatment, they had on hand enough vincristine for two days.

Of course I've explained that I'm a social statistician, so immediately my mind went to thoughts of whether the regimen would be effective with vincristine administered only half the time. Miraculously, and due in no small part to the vigilance and dedication of my healthcare team, they were able to locate enough vincristine for me to receive it the whole time. And you would think I'd be happy, but in fact, I was quite disturbed by this. It's all basic economics: if I get a drug in short supply, then someone else who also needs it is probably not going to get it. This is a cruel and utterly avoidable dilemma that oncology finds itself in, here in the United States.

Additionally, the public's understanding of this crisis is quite complicated. The Institute for Safe Medication Practices, for example, has extensively researched this issue and has found that despite the fact that shortages impact as many as 1-in-4 of all cancer patients, that most people fundamentally don't understand the reasons why drug shortages occur. A fantastic article in the New England Journal of Medicine, however, elucidated the issue quite directly: it's all about money. Vincristine, for example, is made from a simple flower, so there is no real medical reason as to why it should be in short supply. Simply put, drug companies have difficulty making the profit margins they would like off of drugs that are essentially naturally-occurring compounds; so... what they do, in effect, is stop making them from time to time so they can drive up the cost of the available supply. For all the sacrosanctness of "American exceptionalism," which by the way I largely agree with, it's just plain disgusting that we value profits over peoples' lives in something as literally life-or-death as cancer treatment.

It's difficult to say what can be done about this, especially given the enormous power of BigPharma; but change, as it were, has almost always occurred at the grassroots level. Some believe, as I think is a valid analysis, that the plain reality that people are dying so a few companies can make a buck will eventually catalyze a healthcare-centered solution to this problem. I certainly hope so, because most attempts to deal with this issue, to date, have been unsuccessful. The free market is a wonderful thing, and it has certainly driven the American economy to great riches; it also has NO place involving itself in decisions about whether or not people live. Please support organizations like Stop Drug Shortages so we can put an end to this atrocity now.

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.

Ouch: Hurting in Places You Didn't Know Exist

Cancer produces a unique type of pain. Candidly, I thought (as I'm sure so many others did) that I would be immune to cancer pain, and my general well-being after my first treatment gave me no reason to suspect otherwise. Then a few days before round two, chemo and I met in a dark alley somewhere, and chemo won. The most common type of cancer pain is called neuropathy, which involves any number of symptoms relating to sensation or control of the limbs and extremities. My legs hurt constantly, and what began as impaired control of my right arm has now progressed to the most annoying, dull-ache sensation I have ever felt. It's as if someone is constantly pulling my arm outward from the socket, and there is little to no reprieve from it. Neuropathy is a serious issue that should be addressed with your doctor. She or he is not likely to worry about it, as long it goes away, but if it becomes more persistent, then it must be treated. Moreover, the symptoms will likely continue months to even a year after your last treatment (oh yay me!). My experience with neuropathic pain has led me to the following habits or suggestions for anyone else who is just starting chemo or who is dealing with this fabulously annoying and often very disconcerting pathology:

1. When possible, arrange to be driven to and from wherever you need to be. You just never know when neuropathic pain is going to change, and getting a sudden spasm or losing control of your arms or legs while driving could... well, let's just say you might not need chemo anymore.
2. Always have pain medication handy, in the original bottle to avoid issues with law enforcement. ALWAYS!
3. Consider alternative/holistic treatments (within reason and after consultation with your doctor). I, for one, am a big fan of Reiki massage, which involves only the lightest touch to help stimulate healing. It sounds a bit coo-coo, I know, but after one session, trust me I'm hooked. And I'm a man of science!
4. When having a neuropathic episode, such as losing control of a limb, talk to it. (Yea I know, coo-coo.) Okay, don't do this in public. :) But seriously, talking to your limb, almost willing it to move, is actually neurologically sound, as it forces the brain to send impulses to the limb and may help stimulate recovery. Visualizing your limb moving while you're doing this can help too. For that matter, neuropsychologists and medical researchers have suggested lately that "seeing" yourself getting better during treatment seems to actually improve the efficacy of the treatment. (My we are complicated beings.)
5. Finally, massage or lightly caress the affected limb while your having pain or loss of control. This helps stimulate bloodflow to the area and can improve mobility and ease the pain.

Happy Memorial Day

In memory of my grandfather, Carmen N. Veneziano, who fought bravely for our country during World War II, and in memory and honor of the countless other veterans who have made the ultimate sacrifice for God and country, a heartfelt and blessed Memorial Day, and thank you.

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.