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...

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!

Whirlwind Couple of Weeks

Wow. So to my readers, I apologize for the long delay in content. It has been a crazy couple of weeks that has made my life something of an episode of House. I will post more details in the coming days.

Favorite Things: My Top 20 Apps

Well, as promised, this is the first in a series of "favorite things" posts, which I hope will bring a little light-heartedness to what can be a sometimes serious, heavy blog. I thought it appropriate to begin a list of my favorite things with a list of my favorite apps, a gentle nod to the consummate e-nerd that I am. When you have cancer, you think twice about using the phrase "cannot live without," but just shy of that, these are simply must-have apps that I use throughout the day, everyday. And if you're like me, you're always looking for new, trendy apps to liven up your digital life. Just an upfront disclaimer: these are all for Android. If you're using that "fruity" brand, the availability and nature of these apps might be different. Enjoy...









THE MISCELLANY HOOTENANNY'S TOP 20 APPS

1. GO LAUNCHER EX: Every phone has a home screen launcher... it's the app that runs when you press the home button. You could never change it and just use the factory-installed version, and probably be fine. But why just be fine? There are several really fantastic home screen launchers out there that allow you to customize virtually every aspect of your mobile experience, and in my (and several million others') opinion, GO Launcher EX is just the best out there. Seriously, give it a try, and if you don't like it, you can always uninstall.
2. FIREFOX FOR ANDROID: Honestly, and although I use Firefox on every one of my other computers, I never thought to change the Internet browser on my phone. I did recently, just out of curiosity, and I am SO happy I did. Enough said.
3. FACEBOOK MOBILE: I'm gonna go out on a limb here and say that Facebook mobile is probably better than the full Internet version. The interface is streamlined and easy to use, without sacrificing any (from what I can tell) of the features you get using the full Internet version. If you haven't tried it, you really should.
4. AVG ANTIVIRUS FREE: You probably didn't think about getting an antivirus program for your phone, but an antivirus is probably more essential for your phone nowadays than it is for your computer. I've been using AVG Free for years, and it's simply the best, comprehensive, all-free antivirus program out there. And if you're partial to paranoia (like me), you can cheaply upgrade to the full version for not a lot of dough. 
5. BANKING APP: For privacy reasons, I'm not going to divulge exactly which banking app I use, but if you bank with any reasonably large, or otherwise reputable, bank, it is likely to have an app. And as long as you change your password frequently, I HIGHLY recommend downloading it. The financial world is definitely trending this way, and, frankly, I don't know how I managed my finances before. Mobile banking is where it's at.
6. GOOGLE KEEP: FINALLY! An app for the yellow-sticky-note-obsessed! Everything and more you ever wanted for the chronic list-maker. (Also on my top widgets list.)
7. POCKET: I just found this little gem of an app recently, and boy am I glad I did. Ever wish you could just take that recipe or that article from a newspaper, or whatever, and just stick it in your pocket? Well, now you can. This app interfaces with the "Share" function in every other app, and downloads anything and everything you can imagine into a beautifully crisp, yet simple, interface. With the option to add labels and organize your downloads, you'll never read anything right away again... you'll stick it in your Pocket and read it later!
8. ALLTHECOOKS: For the foodies out there, this is just the best recipe exchange app out there. The simple, logical interface is what first attracted me to it, but with the option to add your own recipes in a REALLY easy UI, I'm now using this app to digitize my endless collection of recipes from God-knows-how-many books and collections. You'll never wonder what's for dinner again.
9. DOUBLETWIST: This is, in my opinion, the best among the dozens of music players out there, and considering that the "fruit" brand does music better than anyone else, having this app on your phone equalizes things a little bit. Did I mention that it allows you to snyc your iTunes library with your phone, for free! Seriously, download it NOW.
10. GMAIL: This app literally changed my life. Since downloading it, I honestly can't remember the last time I checked or sent e-mail from a computer. I'd say that's an endorsement. 
11. FLIPBOARD: This is probably the coolest little app I've ever found, and to be honest, I don't really remember how I found it, although it is safe to say it was likely during one of my prednisone-induced-Play-store "shopping" sessions. Flipboard is news app meets Pinterest meets online magazine browser. You select from tons of various topics and tons of various outlets within those topics (e.g. NPR under the News tab, or Kitchn under the Food tab). Once you have your own little mix of feeds in place, you can view them from the app's home screen in an easy "flippable" interface, or have them scroll in intervals with the app's widget (yes, this is on my favorite widgets list too, coming soon). No account is necessary, but if you want to customize the experience a bit more, you can log in using Facebook or even Twitter. And to top it all off, you can "flip" favorite articles or pieces into your very own "magazines," which also have the option to be made public... making you an instant publisher! Could it get any cooler?
12. gREADER PRO: Okay. There are a LOT of readers out there. Pocket definitely tops my list, but for certain things you may want to retain the option of using a basic RSS reader than does RSS feeds very well and not much of anything else. For me, I like to use an RSS reader for my statistics subscriptions, and the one I go with is gReader Pro. It syncs with your Google account, if you want, and provides a very clean, limited (yet customizable) interface that lets you git-r-done, if you will, with your RSS feeds. The widget is also really sweet and a must-have, and on my top widgets list. :) (Coming Soon, I promise.)
13. GOOGLE DRIVE: If you haven't quite figured it out yet, I'm a Google man. I'm not naive, and I have my justified concerns about privacy and whatnot. But frankly, this is just the world we live in, and as long as you take reasonable and recommended precautions, you may as well just jump into the (or UP into) the Cloud and never look back. As a student and academic, the ability to access one or all of my many, many papers, exams, research articles, etc... is a necessity. And considering that Google Drive syncs with your Gmail and other Google apps, I think it's a notch above Dropbox, or similar Cloud-based storage services.
14. ESFILEEXPLORER: Once again, phones are basically small computers. What lacks on many phones is the ability to explore their contents much in the same way you would a computer's hard drive. This is starting to get a bit more advanced/nerdy than most people would need out of their phone, but if you are so inclined, a decent file explorer is a must-have, and ESFileExplorer is the best out there, giving you all the functionality and ease-of-interface that you would get using Windows File Explorer, for example.
15. ZEDGE: If you like ringtones, and who doesn't, download this. It's totally free and has virtually every possible song/notification tone you could ever imagine. 
16. PICSPEED: Just the best (and largest I might add) wallpaper app out there. 
17. AMAZON MOBILE: If you're hooked on Amazon (like I am), you just gotta download the app.
18. MYHABIT: This is posh, up-scale companion to Amazon that features really swanky big name brands at ridiculously low prices. A must-have for the fashionistas out there.
19. ULTIMATE CALL SCREEN: Bet you never thought to change your call screen, did you? Neither did I, then I found this app. It lets you sync your contacts photos with Facebook, change the appearance of the answer/reject buttons, and more. Really, really cool, and interfaces remarkably well with Android.
20. WORDS WITH FRIENDS: Need I say more?

Victory Velvet Cake: Something To Look (Droolingly) Forward To

Picture from Google Images

I made a red velvet cake recently for a family member's birthday, and it reminded me how much fun this cake can be. I've made it in a variety of other colors for their appropriately hued holidays (for example, green velvet for St. Patty's Day), but I had the idea of incorporating the versatility of the cake with a way to celebrate whatever cancer victory you wish (i.e. end of chemo, 2-year all-clear, etc..). Lymphoma is represented by lime green, very close to the cake pictured, although this particular cake is not mine. But you could do any variety of colors depending on your type of cancer. This is now my recipe for red velvet cake, although it is about the fifth or sixth adjustment to the original recipe I used for Paula Deen's "Grandmother Paul's" red velvet cake. I plan on making a lime green velvet cake soon, so I'll be sure to post some pictures as soon as they are available. In the meantime, I hope you enjoy this recipe.



VICTORY VELVET CAKE with VANILLA BEAN CREAM CHEESE FROSTING

For the cake:

• 2 sticks butter
• 2 cups sugar
• 3 eggs
• 3 tablespoons cocoa powder
• 1 to 2 ounces food coloring (depending on color and desired intensity)
• 3 cups cake flour (2 1/2 if using only 1 ounce food coloring)
• 1 teaspoon kosher salt
• 1 cup buttermilk
• 2 teaspoons vanilla extract
• 1/2 teaspoon baking soda
• 1 tablespoon vinegar

For the icing:

• 2 8-ounce packages cream cheese, softened
• 2 sticks butter, softened
• 1 1-lb box confectioners' sugar (more or less depending on taste)
• 1/8 teaspoon salt
• scraped seeds of one vanilla bean (optional, but recommended)
• 1 teaspoon vanilla extract 

Directions:

1. Preheat oven to 350 degrees F.
2. In a large bowl, cream together sugar and butter until pale and fluffy. Mix in eggs, one at a time.
3. Mix in food coloring (use only 1 ounce at this point).
4. On a sheet of wax paper, sift together flour, salt, and cocoa powder.
5. Add buttermilk and sifted dry ingredients alternately to bowl, ending with dry ingredients.
6. In a small bowl, stir together vinegar and baking soda (it will fizz) and add to bowl, stir well.
7. Add vanilla.
8. Observe the color. Cake will bake approximately 1 shade darker. If desired, add up to one additional ounce of food coloring.
9. Divide batter evenly among 3 8- or 9-inch greased rounds, and bake approximately 20 to 25 minutes until a cake tester comes out clean. Allow cakes to cool completely.
10. Meanwhile for the icing, cream together butter and cream cheese until thoroughly blended. Mix in salt, vanilla, and vanilla bean seeds. Test for sweetness and add more sugar, if desired.
11. If icing appears too thick, you may add about a teaspoon of milk at a time until desired consistency is reached.
12. Place a little icing on the surface of a cake platter and situate one layer. Add a few dollops of icing, smooth, and place another layer on top. Repeat for the third layer, inverting the top layer so the flat bottom is facing up. 
13. Spoon some of the icing on top and using an offset spatula, spread the icing over the top and down onto the sides of the cake. Continue adding icing in this fashion until a thin layer of icing surrounds the entire cake. (This is called a "dirty" icing, and does not have to be perfect.) Refrigerate approximately 30 minutes until icing has hardened some.
14. Remove cake and frost with the remaining icing. The hardened "dirty icing" will allow you to achieve a smoother, cleaner final frosting. If any icing is left over, spoon into a pastry bag fitted with a star tip and use to add a decorate border around the bottom and/or top edge of the cake.
15. Garnish additionally as desired and according to to chosen coloring. Strawberries or raspberries go nicely with red velvet cake, whereas lime wedges or kiwi slices might be nice with a green velvet cake. Use your imagination!
16. If not serving immediately, it is highly recommended that you keep this cake refrigerated. You can remove the cake 30 minutes prior to serving and allow to set at room temperature if you do not like a cold cake.
17. ENJOY!

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.

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.

A New Post Feature for A New Decade

 

So here's the thing: I kinda like my life... okay, I love my life. It sounds like a rather "captain obvious" statement, but not everyone can say that. Most people at least dislike, if not hate, huge aspects of their lives. Some people hate their jobs, or where they live, or the amount of money they make, etc... Not me. I mean, I'm not trying to be coy here: of course there are things I would like to change. But for the most part, at this point in my life's story, I am ethereally content with where I am, what I do, and where I am going. And it has taken a while for me to get here. The first half of my twenties set me on the fast-track toward becoming an unfortunate social statistic, but as I've mentioned before, with a lot of help and a LOT of hard work, I've been able to right the ship of my past. I'm doing what I want to do, I'm living where and how I want to live, and I've become the type of person I've always wanted to be. And this is all happening eerily close to my 30th birthday.

Since blogging can, and often does, devolve into little more than chaotic rambling, I thought that it might be nice to introduce a new type of post to my blog that features my "favorite things." These will be intermittent "Top 10" lists, if you will, of various things that I have just come to love, and that I feel make my life and routine unique. And in doing this, I'm hoping maybe someone else might come to enjoy one or more of these things as much as I do. Stay tuned for the first of these posts very 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.

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...

Homemade Peanut Butter Cups: Need I Say More?

I observed an insane amount of peanut butter in my pantry and several partly-used bags of chocolate and thought, peanut butter cups? Oh yes. The photo is of a recipe I made that I found on an app I use, but I have adjusted the recipe to reflect my desired changes. It gives you the general idea of what they end up looking like though. Aren't they great! Yes, there is a disturbing amount of butter in this recipe, but what's wonderful about these is that you can actually eat just one and feel satisfied!










HOMEMADE PEANUT BUTTER CUPS

Filling:

• 1 jar (16-18oz.) creamy peanut butter (I use Peter Pan)
• 2 sticks butter (you heard me right, don't judge me!)
• 2 1/2 cups powdered sugar (up to 3 cups based on your tastes)
• scant pinch salt

Coating:

• 1 bag semisweet chocolate chips
• 1 stick butter
• 1/2 teaspoon espresso powder (optional)

Assembly Options:

1. 13x9in. baking dish lined with wax paper OR
2. 2 12-count cupcake pans with wrappers OR
3. 2 24-count mini-muffin pans with wrappers 

Directions:

1. Melt butter in a medium saucepan over medium heat.
2. Turn the heat to LOW and add peanut butter, mixing constantly until smooth.
3. Take the pan off the heat and add sugar and salt, stir VERY well, it will be a workout.
4. In a separate microwaveable dish, melt butter and chocolate by microwaving for 20-seconds, stirring, and repeating, about 4 to 5 times. Stir in espresso powder.
5. If using the BAR option, just pour PB mixture into the pan, cover with chocolate, and refrigerate until chocolate is set.
6. If using the CUPS option, fill each lined cup about 1/3 the way with the chocolate, and use a spoon to spread the chocolate upwards along the sides of the liners. Refrigerate about 30 minutes until chocolate is mostly hardened.
7. Then, spoon some of the PB mixture (about 1 tsp for mini-muffins or 2 tsps. for cupcakes) in the center of each chocolate cup, flattening out the top just a bit. Reheat the chocolate just enough to make it pourable again (in 20-second intervals ONLY) and cover each cup with enough chocolate to fill the wrapper. Refrigerate again until chocolate is set, at least 30 minutes. Enjoy! 

Cream Cheese Chicken: A Soothing (AND EASY) Meal for the Cancer Patient (Or Anyone, Really)

Picture from a Google Search. The recipe is mine, however.

Easy is where it's at when you're trying to make wholesome meals and be on chemo. Eating out too much is just not good, period. And cooking for yourself has a number of mental and physical health benefits. For me, it's all about slow-cooking. I've had this recipe for a long time, and while it may appear to be unhealthy, it actually isn't at all, and can be easily tweaked to reflect more health-conscious ingredients. Did I mention it's easy???









CREAM CHEESE CHICKEN 

• 1 lb. boneless, skinless chicken breasts
• 1 stick butter (or half butter, half chicken stock)
• 1 envelope dry Italian dressing (Good Seasonings)
• 1 8oz. package cream cheese (you can use light cream cheese)
• 1 can Cream of Chicken and Mushroom soup (or any Cream of Chicken soup)
• 1 8-12oz. jar mushrooms, drained

1. Place chicken in a slow cooker with butter and dry Italian dressing. Cook on low 6-8 hours.
2. During last hour of cooking, add remaining ingredients. Stir well before serving.
3. Serve over Basmati or brown rice and with broccoli for a healthy meal.

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.

Chemo 101 meets Physics 101: Rate times Time = Distance

So this is my final full day of chemo for this round. If you're having inpatient chemotherapy, it's your last day where you want to pay particular attention to the infusion rates on the machines and, relatedly, the volume to be infused. I have had recurrent issues with these numbers, and no, it's not just me being a math nerd.

Instead it turns out that there is anywhere from 1 to 3 hours worth of normal solution left in the bag even when the machine says the bag is done. This is natural: the chemo mass actually adds a bit of volume to the overall solution. But, since my infusions must be given over 24 hours (+/- a few minutes Max) it requires a bit of recalibration on our end to ensure that the 24 hour cycle remains intact.

Gone unnoticed or unchecked as it did during my second cycle, you could find yourself in a situation that puts you 6 or more hours beyond your expected completion time. And by the time I'm dealing with twice the original dose (during cycle 6) the added mass could add a whole day even. Since this can't happen, it's important that you remain informed about your treatment and in constant communication with your doctors and nurses.

In my case, my doctor appreciated me pointing this out. The nature of my treatment is to increase the dosage sequentially over the SAME time period in order to allow the chemo to be as aggressive as the cancer. If the time frame had been accidentally extended because of a simple oversight about the basic rules of physics, then I might never have received the optimal dosage that is associated with the treatment's high rate of efficacy.

But this is starting to get a little mathy, when there is a general point to be made here. IF YOU THINK SOMETHING IS NOT RIGHT, ASK QUESTIONS!!! Remember that your prognosis is as much a function of what the doctor does as of what you do. The best outcomes arise when a partnership is formed between the healthcare provider and an informed, yet respectful and humble, patient.

Chemo 101: Just When You Think You Got It All Figured Out...

"It" changes altogether. My concerns about steroid dependency are somewhat addressed. My doctor agrees with me that the abnormally high dose I'm on has likely made me instantly dependent. Therefore, I'm going to stay on at least a low dose of prednisone for the foreseeable future. This doesn't really resolve the dependency, but it will put an end to the withdrawal symptoms, which for now are purely intolerable.

But more to the point here, I had assumed as before that the jump up to 240mg of prednisone during each of the days I'm in the hospital would hit me the way it did before, that is to say rendering me ultraproductive. In fact at this point, I'm now on day 3 of 4, it has done little more than hyperstimulate me to the point of catharsis and narcolepsy. That said, I apologize for the heretofore unpublished posts which are still forthcoming and will be up this week.

But I thought I'd take this short moment of reprieve to share this lesson that I'm coming to learn. That is that the way you respond to treatment while at home is likely to be far different from the way you respond while in the hospital. For me I tend to have a good bit of energy and creative urge while at home, though the hospital just makes me feel delirious. Frankly I can only take so much of being in the hospital before I feel that I can get no better until I leave. I'm thankful that my regimen is only 4 days, because much longer than that and I might become a basketcase. But That's another post altogether. Needless to say, to be continued...

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!

Chocolate Chip Muffies: The Best of Two Wonderful Worlds

 What do you get when you bake chocolate chip cookie dough in a muffin tin? Well, muffies, of course! I saw this idea in the AllTheCooks app that I use somewhat religiously and immediately had to try it. You have all the taste of a perfect, homemade chocolate chip cookie, with the added pluses of a crisp, almost caramelized edge, and a moist, gooey interior. It's the best of every chocolate chip dough world! Here's the recipe if you want a luscious treat:





CHOCOLATE CHIP "MUFFIES"
(Recipe courtesy an AllTheCooks app user)

• 1 c. butter
• 1 c. white sugar
• 1/2 c. firmly packed brown sugar
• 2 eggs
• 2 teaspoons pure vanilla
• 2 1/3 c. all-purpose flour, unsifted
• 1 tsp. salt
• 1 tsp. baking soda
• 12 oz. chocolate chips (1 bag)

1. Preheat oven to 375F.
2. Cream sugars and butter until light and fluffy.
3. Add eggs and beat well.
4. Beat in salt, baking soda, and vanilla.
5. Add flour a cup at a time, mixing well, but just enough to incorporate.
6. Stir in chocolate chips.
7. Spoon batter into greased cupcake tins (do not use cupcake liners) using enough batter to fill each cup approximately halfway.
8. Bake for approximately 20-22 minutes, or until lightly browned on top.
9. Makes about 18 "muffies."

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.

Sit Down for This One, Cuz' It Might Make Ya Faint...

I have been very, very lucky so far. Because my white cell counts have been normal, I have not required any supportive care, but just mention the words "supportive care" to an experienced cancer patient and she is likely to cringe. This is because "supportive care" is just a fancy way of saying, "you need to get Neupogen or Neulasta." No, we don't cringe because it is given in syringe form, nor because it hurts, nor because it has any particular side effects; rather, we cringe because Neupogen costs $3,000.00 PER INJECTION! It gets worse: Neulasta costs more than twice that. The decision between the two is a consideration of your particular progress and exactly how compromised your counts might be. Chemo wreaks havoc on your immune system and if your counts get too low, you might require the more costly injection, which involves a larger molecule of the main active ingredient, filgrastim, thus allowing the body to process it over a longer period of time. Either way, you're stuck up the proverbial estuary, without means of locomotion. And don't think insurance gets you off. Mine and many other plans are not exactly crazy about the cost of this, so don't be surprised if you get a bill anyway. There is hope, however. If you qualify, at least, a group known as The Safety Net Foundation offers assistance to people who are prescribed medications from the Amgen pharmaceutical company (yes, they have a bit of reputation for way overpricing their drugs). Aside from this, you just have to hope and pray that your counts stay good, and I'd recommend consuming lots of orange juice or other Vitamin C-rich products to give your immune system a hand where you can. For now, this issue remains highly controversial, and I consider myself very lucky to have avoided it so far. Nonetheless, I may have to receive this medication at some point, and I am sympathetic to those who receive it on a regular basis. Consider this: 6 round of chemo X $3,000.00/injection = $18,000 alone! By comparison, adriamycin (a common and powerful anti-cancer drug) costs between $25 and $75 per cycle. Something is majorly wrong here.

A Must-Have for the Technologically-Inclined Chemo Patient

If you are like me, and addicted to your smartphone, you understand the epic battle that occurs between the "need" to have constant access to the world of social media and the reality of a limited phone battery. Aside from this, I normally am on the road several days a week, and it is important for the mental health of my family and friends that my phone be always available. I recently discovered the ZeroLemon battery (I'm not a paid spokesperson), which I can personally attest to being able to keep a phone alive for upwards of three days on a single charge. I believe these are mostly for Samsung/Android devices, but the general sentiment here remains. If you use a smart phone, I recommend purchasing an extended battery so that while you're in the hospital you can enjoy phone access readily and without the frustration of having to find an outlet that works with your IV stand (I hate those things). It's not something you would normally think about, but trust me, it will make treatments (and your life) a lot easier, and almost all of them are very affordable at around $40 or less!

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.

"Navigating Cancer:" A Must-See Resource for Anyone Touched by Cancer

Full disclosure: I am not currently paid or supported by any site or company to run this blog or endorse. That said, I was so overwhelmed by the depth and sophistication of a particular site I came across that I decided to devote a whole post to it. Navigating Cancer is a completely free all-in-one resource for understanding, treating, managing, and watching cancer with specific portals for physicians and cancer patients, as well as their supporters. On the patient end, it allows you to share your story, links you with any of the nearly 50,000 users who have shared experiences, offers blogs and testimonials related to treatment and management of side effects, and offers many very practical resources such as an appointment manager and a prescription manager. I suspect that this site will be very helpful to me in the future, and if you haven't done so already, I highly recommend you check it out.

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.

Luxurious Sweet Tea: Summer in a Glass

So I love sweet tea, and I particularly enjoy McDonald's sweet tea (about the only thing I like from there). But as with almost any foodstuff, replicating it at home can be more trouble than its worth. Coincidentally, I stumbled upon a curious recipe on the NPR website, which I made, and then altered (which I almost always inevitably do), but hot-dog-diggity, the stuff ended up tasting darned-near close to the Mickey D's version. "Recipe?" you're thinking... I know. Sweet tea is hardly a recipe, but the kicker here is a bit of baking soda, which calms the tannins in the tea and gives it a wonderfully smooth mouth-feel, dare I say luxurious. Sweet tea is like mozzarella cheese, its more of a method than a recipe, but find the right one and it is, as Guy Fieri would say, "money!" Here's what I did:

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.

Lasagna Bolognese: A Labor of Love

I took a stab at making lasagna bolognese the other night, which is the laborious product of two already laborious recipes: lasagna and bolognese sauce. A quick note about recipes here, in general: I almost never follow recipes! I research the general item I'm attempting to make and take bits from here and a method from there, and pretty soon I end up with a de facto original recipe. I will, however, give credit where it is due if I post someone else's recipe. That said, here is my recipe for this somewhat ridiculously indulgent meal, Lasagna Bolognese:

Impromptu Inspiration: My Super Breakfast

Proper nutrition is important for everyone, but it is absolutely essential for cancer patients. Malignant tumors drain your body of essential nutrients, so it is really important that, if you do have cancer, you are supplying your body with ample nutrition. Multivitamins are okay, but ask any doctor worth her own weight and she'll tell you that the best way to get vitamins and minerals is from food. I found this cereal the other day called Product 19, by Kellogg's, and it is essentially corn flakes on steroids. It is loaded with 100% of essential B vitamins and other nutrients, and eaten with banana slices, it is the perfect way to start your day right. It is low in fiber, which is good if you're on a low-residue diet (more on that later), but if you're inclined to up the fiber content a bit, some fresh blueberries or even almonds would work well.

Cancer Awareness: Know Your Color

You Have Cancer: Now What? (Practical and Emotional Tips)

I suppose the natural next post would be to put some tips/advice for actually being the patient. This is, by no means, medical advice; rather, these are just some helpful things I've learned to do as I've managed my own diagnosis and treatment (more or less in order of importance).

1. Rely on your doctor as the primary source of information about your type of cancer and your prognosis (a.k.a. STAY AWAY FROM THE INTERNET!!!). There are times for a bit of self-education, and there are times when you should simply should shy away from search engines (no disrespect to Google). The days/weeks after your diagnosis are definitely one of those times. I made the mistake of browsing the Internet one too many times and almost stirred myself into a nervous breakdown. REMEMBER THAT STATISTICS ARE NOTHING MORE THAN AVERAGES! (And that's coming from a statistician). Your doctor is the best source of information about the likely outcome of your treatment. No two cancer patients are alike, even if they have the same cancer, so save yourself some tears and call your doctor if you have any questions.
2. Use the Internet for supportive resources, however. Searching for a particular cancer will yield mostly medical sites, most of which are pretty clinical and dry, and not often that sensitive with statistics, survival rates, etc. YET, using the web to access support groups or patient-run sites can be very, very helpful and uplifting. Some of these sites are listed to the left under "Helpful Links" and supportgroups.com is a very typical example. I'd also recommend looking for a support group that is social media-based, as in on Facebook or Twitter. These groups tend to post very positive and uplifting information very frequently, and maintaining a positive mindset can be very beneficial to your health.
3. Keep a calendar and make To-Do lists. This is really not an option: your life is about to be dominated by doctors' appointments, follow-ups, infusions, and hospitalizations. The only way to manage this is to keep a calendar. If your a smartphone junkie (like I am), use your phone. I just use the standard Calendar app on my Android phone with a widget on my home screen that tells me when my upcoming appointments are. If your not a phone person, get a small, portable calendar booklet with at least weekly divisions to give yourself plenty of space. I also recommend keeping To-Do lists on a small, portable notebook (I use a small size yellow tablet from Staples). Actually writing things down helps you to remember them, and crossing things off of the list with an honest-to-goodness pen is very therapeutic.
4. Get a big ol' pillbox... you're gonna need it. First, ask your doctor for an info sheet on your treatment regimen if you don't have one. Then, go to the pharmacy and get the biggest pillbox they have, because you're likely to be on about 5 to 10 different meds for quite some time. Dose them out as prescribed for the week ahead and save yourself the stress of trying to remember if you took a particular med or not. Equally important: keep your must-take meds separate from your as-needed meds. 
5. Buy a pill fob for your keychain and keep a few "as-needed" meds in it. Click here for a link to the one I use. I keep a few pain pills and Zofran (the anti-nausea medication) in this. You never know when you're going to get a sudden burst of pain or nausea, so having these handy is a huge relief whenever I'm out of my house.
6. Buy a thermometer. If you EVER run a fever while on chemo, you need to call your doctor RIGHT AWAY! There are times when you may feel feverish, yet actually be fine, so save yourself the worry and just buy a decent thermometer and check your temp at least twice a day. If you are worried about the price, ask your doctor to write a prescription for one, as your insurance will likely cover some of the cost.

Simple Rules for Being a Friend to a Cancer Patient

Put one post in front of the other, and soon you'll be rolling out a blog.

So I was thinking about what an appropriate second post would be, and it occurred to me that no matter how hard cancer can be on the patient, it can be just as difficult for the patient's family and friends. It's awkward... you want to be caring, without fawning. You want to be sensitive, without being patronizing. So I figured a good place to begin this dialogue would be to offer a few simple rules to help everyone involved in a cancer patient's life navigate this tricky relationship.

1) When saying hi, don't use prolonged vowels. I was out one day at the store and a friend rushed over to me and, like the second coming, said, "Hoooooooow aaaaaaaare youuuuuuu?" It was that kind of "hello" that by its very tone and length implies something is wrong. Of course I know this person meant this only with the best intentions, but I was actually having a great day and feeling quite good, and in that moment I felt sick again. Moreover, the way she said it brought attention to me from people standing nearby, which was a bit embarrassing. There is nothing normal about having cancer, so something as mundane as a simple "how ya' doin" can bring some measure of order and peace into an otherwise chaotic journey.

2) Don't bring up "the cancer," unless the patient brings it up. It's kind of an unspoken understanding that you know that I know that you know that everyone knows, etc... And if you don't know, then the patient should be the one to tell you. When you have the big C, it can be all-consuming, but there is a limit to when and where (and why) a cancer patient may want to talk about it. If he or she doesn't mention it, don't bring it up. But that brings me to rule 3.

3) Indulge the patient if you visit him or her in the hospital. This is a touchy subject, but twice so far while receiving treatment, I have been visited by friends who spent an hour or two with me talking about nothing but their own problems. There IS a life beyond cancer, so I tried to be a nice friend and didn't say anything; however, it's probably best that you not vent about your issues to someone who is getting copious amounts of cytotoxins pumped into their veins. When you are receiving chemotherapy, your entire day is nearly planned to the minute, and you have very little control over your life. So being able to talk about the chemotherapy and any progress or updates to a friend feels a bit like taking control over your regimen. Outside of the hospital, keep conversation normal, but in the hospital, let the patient do the talking.

4) When visiting a chemo patient in the hospital, food and magazines are always welcome. I could probably start a florist/card store with all the flowers and cards I've gotten while in the hospital. AND I LOVE THEM! BUT, keep in mind that hospital food is often incredibly difficult to stomach and entertainment is, well... lacking. Your friend's dietary restrictions/appetite in mind, a very welcome gift would be a decent meal, and magazines are like gold, as they allow for hours of mindless abandonment. Very cheap and very simple, but VERY appreciated.

Beating the Odds: The Day My Life Began... Again

It seems like a contradiction in terms to say that the day my life began (again) was the fateful day a few months ago when my oncologist walked into the room and uttered the words, "You have a very aggressive cancer." But I suppose this is fast-forwarding the story that, humbly, is my life. And I further suppose that any proper blog should feature at least a modest introduction to the blogger. I'll try to be unassuming, but whether read or not-read, this entry is probably more self-therapy than useful knowledge. I feel a bit like my life has been an exercise in beating the odds, since as a social statistician, I'm more aware than I'd like to be of how I should not be alive or successful today.

On the surface I'm your typical white male, but therein the privilege ends. In the interest of moderated disclosure, I'll just say that men have never played a prominent role in my family life. I was raised by my two moms--sisters, in fact--who made the fruitful decision each to raise their children together in one household. So, we have my two moms, my sister (genetically my cousin, but as a sociologist I know that sibling relationships are more about interaction than blood), and my grandmother... and me, the lone male. And that's my family, the best family a guy could ask for; it's a hootenanny--highly informal, entirely unconventional, and very feminine. But it made me the man I am today and I wouldn't trade it for anything. And for that matter, it is one of the reasons that I find the United States' lack of a coherent family policy so appalling. Beating the odds, part one.

As for the details? Well, let's just say that despite more recent progressive trends, being gay in America has not been easy. Beating the odds, part two? Maybe. But that's only after I spent the better part of my early twenties embroiled in drug addiction, the end result being failing out of school and barely getting by in the retail industry. It's hard to say what makes people break, but I have... twice. Perhaps the only constant in my life has been my family. In fact, it was at their suggestion some five years ago, that (more out of desperation than sudden enlightenment) I decided to go back to school. Thank God. That first night of classes completely reversed the trajectory of my past decisions. I went on to earn a B.S. in Sociology, magna cum laude, and most recently an M.A. in Applied Sociology, also magna cum laude. I am now earning my doctorate in Policy Evaluation and Quantitative Methodology (read NERD), and teach college statistics and research methods at my alma mater (how cool is that?) But I had a lot of help from my family: they've always been there for me, and that's why I spend every day of my life hoping that I can be there for them.

Lest this sound self-aggrandizing, this is the part of the blog where I hope that my apparent self-indulgence will instead serve as inspiration to the unlikely visitor who may be going through a series of unfortunate events. If you are young, gay, Black, Hispanic, female, etc..., life is hard, but with a little bit of determination and a LOT of love from the right people, anything is possible. PLEASE know this. Don't ever apologize for who you are, only for what you've done. And after that, do better.

Fast-forward to today. I don't know if you can anthropomorphize a year, but regardless, I have had to tell 2013 to calm down more than once lately. After getting my Master's in December, I spent the entire month of January and most of February convincing myself that I had recurrent flu. Like so many people, I put off going to the doctor until the Nth hour. A few scans, exploratory surgery, and a negative biopsy later, and it was determined that I had ulcerative colitis. Thank god for the learned suspicion of a few incredibly talented doctors who referenced my tests only to find out that I have a very aggressive form of lymphoma that had metastasized to my colon (stage 4). Prior to 6 weeks ago, I would've had approximately 3 months to live, but thanks to the best oncologist, nurses, and family in the world, I'm beating the odds, part three. My prognosis is for a full cure, but when you've confronted death, you approach everything anew, with the curiosity and elation of a child's mind. My best friend of 20 years also committed suicide, which will needless-to-say, play a strong part in shaping the nature of my advocacy for the future. For the two "bummers" I've endured this year, I also got in to my number one PhD program, and got work on a National Science Foundation grant. I have a LOT to be thankful for, and I feel in no small way that I have a solemn obligation to pay it forward. Hence, this blog.

As for said-blog, cancer will likely feature prominently for some time, but I'm also a consummate foodie, and activist scholar. I'll try to feature meal ideas and recipes that I have found to be conducive to the life of a working family-person, and will occasionally ask that you indulge me in a bit of nerd-talk or academic discourse. Other than that, I can't wait to see where this goes! And thanks for reading!