I'm Down With P.E.T. (Yea You Know Me)

So the other big update is that the big update will come soon. (Cryptic, huh?) Basically we've decided that everything hinges upon my upcoming PET scan, with a couple of possibilities thereafter.

First is the potential for a clear result, meaning the cancer is gone or basically gone, in which case we will finish at 6 cycles and call it a day.

Second is the potential that there may be still, more cancer than my doctor is comfortable with, in which case he will run another two cycles of chemo. Additionally, he has indicated that he may, for prophylactic purposes, run a round of intrathecal chemo, which involves injecting chemo directly into the spinal cord to prevent the cancer from spreading into the nervous system, although this type of therapy is done completely outpatient.

I'm not going to lie... I'm not entirely thrilled about this, and when I first heard this news I had a rough several hours. But I tried to keep it in perspective that I'm so lucky to be alive and to be responding so well to treatment, and now I'm more or less at peace with these options. I definitely have a bit of scanxiety, though. :)

More to come soon...

Discharged Today: Feeling Better, But Plan Is To Not Act Like It

I'm like most people... the minute I start feeling better I jump back into action and inevitably overdo it. I'm not going to do that this time. This trip to the hospital took a lot out of me. Although I was admitted for a low white blood cell count (neutropenia), I was also suffering from a colitis flareup, which has renewed some concerns that when all is said and done with my cancer, I might still have to deal with UC.

A lesson to be learned here is that the health of a cancer patient is extremely volatile and prone to change. For this reason, and although I'm feeling 100% better, I'm still going to take a day or two to relax and recoup while at home. Lighter meals and a lot of rest for a few days should help to ensure that I don't negate the progress I've made in the hospital. Although, kinda funny here, I'll just be back here next week for chemo round 4.

Admitted to the ER: One Way to Find Out Good News

The thing with my treatment regimen is eventually the dose gets high enough that it starts to attack your body as much as it does the cancer. For me, this limit was reached at the third cycle, or 160% the original dose. I started feeling pretty crappy Tuesday night and by Wednesday afternoon a call to my oncologist landed me an all expense paid vacation to the hospital (for neutropenic fever). This type of fever is brought on by neutropenia, or a condition marked by dangerously low white blood cell counts. The treatment is granulocyte colony stimulating factor (aka Neupogen) to stimulate white blood cell production, as well as broad spectrum antibiotics to protect against infection.

This is actually pretty common among chemo patients, although it is a serious condition. But it means that we've found the right amount of chemotherapy appropriate for my body and in order to continue progress. And speaking of progress, a CT scan revealed significant improvement of the metastasis tumor in my colon. So for now, onward, cautiously.

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.

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.

Round 3 Underway

I'm Well set Into the third treatment cycle now. My counts were good, so We continued the dose escalation another 20%, such that I'm receiving a dose 40% stronger than the first cycle. I'm feeling lucky, sentimental, retrospective and introspective, and generally blessed. For these reasons, each of them at least loosely attributable to, I expect a multitude of posts over the next few days. Keep an eye out!

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.