Tag Archives: side effects

My Chemo Brain Counter-Offensive

So… yeah. I’ve been having some chemo brain issues for quite a while now and I’m in search of interesting ways to build up my brain muscle to counter these “cognitive disorder” side-effects, as my neurologist so neatly calls them.

I’ve never been a board game – or any game for that matter – kind of guy, but I’ve read and I’ve heard anecdotal evidence that board games do help with one’s focus and clarity issues.

With this anecdotal evidence as my impetus, of course I went to Amazon, the event horizon of the internet, and searched around for what the best board game for my particular interests would be.

And I found this:

Cards Against Humanity
 
As you can see, it tags itself as “A party game for horrible people.” And while I don’t feel that I’m all that horrible, after reading a few of the many thousands of reviews, it does seem like a game that would appeal to my interests.

Does that make me so horrible?

That was rhetorical.

Anyway…

Which brings me to the point of this pointy post…

Research, with you being my source information.

Have you played the game? And if so, what do you think of it? Is it fun? Challenging? Stoopid? Do you feel you have a stronger brain because of your playing it?

And don’t worry, just because you played the game doesn’t mean I will judge you as a horrible person.

Necessarily…

I will, however, admire your courage for admitting it.


If you’re not familiar with the game, you can learn more about it here.

 
 

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Caffeine Therapy

Coffee in Starbucks Yokohama CupBefore the cancer I had been a pretty heavy coffee drinker. I drank it not only because I was addicted to the caffeine and the boost it gave me, but also because I really do enjoy the taste of a well-brewed cup o’ joe. A good cup of coffee, just like a good glass of wine, really does [cliche alert!] make life worth living.

I was a late bloomer as a coffee drinker. Though I always loved its smell growing up—I still have vivid, fond memories of the bubbly coffee percolator sounds and the delicious coffee smells that I woke to every morning as a child—I found its taste repulsive and the heated spoiled crap breath that all coffee drinkers blast out even more so.  I didn’t want to be complicit in that.

But after high school I joined the navy and, like an idiot, immediately started smoking cigarettes, a habit that previously had disgusted me even more than drinking coffee.  If I could force my body to accept and then to crave and then to fervently demand a steady intake of toxic death fumes, then it would stand to reason that hooking myself on coffee couldn’t be too far behind.

Actually, it took another six years.

What finally got me to join the Caffeine Club was the twelve-hour watches that I had to “stand” while stationed aboard my first ship.

I had stood twelve-hours watches all during my time in the navy prior to transferring to the ship, but those watches had always been in large, noisy, bustling communication centers with teams of sailors, which meant that there was always someone around to talk to and to keep me awake during the brutal night shifts.  But on the ship, I stood my watches in a quiet, closet of a room by myself and boy could those midnight watches, or mid-watches as the navy jargon goes, get boring.

Thus, in 1989 began my addiction to coffee.

Coffee and Cigarettes. A heavenly match made in hell.

Fortunately, I was able to kick the cigarette habit about a year later.

But I drank coffee like mad until my cancer.

While I initially started drinking coffee as a crutch to get me through the night, I still hated the taste and had to load in piles of cream and sugar to try to cover it up.  Over time, however, I eventually acquired a taste for the bean. But my passion for the bean didn’t really come until years later after my father casually remarked that to really enjoy coffee, it needs to be drank black. Unpolluted, so to speak.

So I tried it black. And, like most fathers are, he was right. From then on, I no longer was a man who preferred his coffee “sweet and blond” but one who preferred it “bold and black.”

I drank it that way pretty hard for twenty years.

But when the cancer struck, I had no qualms about quitting. In fact, I didn’t decide to quit, I just did without even realizing it. I guess my subconscious took over after they started pumping me full of chemo and steroids and other crap and spared me of any coffee or wine cravings during my year-long treatment and recovery.

Throughout my years as a coffee drinker prior to cancer, every once in a while I would try to get healthy and ween myself off of caffeine.  Not that caffeine is a particularly unhealthy addiction as far as addictions go; but it still is an addiction and deep down, I guess always felt a little uneasy about my dependency on it.

I don’t remember exactly when the last time was I tried to stop consuming caffeine, but I do remember how much it hurt: the eyeball shattering headaches; the total body aches; the nasty moods.

I remember being stuck in traffic for a very long time once during my last attempt at the last weening process and having my legs ache so badly that I thought I was going to have to pull over to the side of the beltway and have the wife come pick me up.  I was jonesing bad. I struggled on, but as soon as I got out of traffic I drove directly to the store, bought two cups of coffee, downed one right in the parking lot, and begged forgiveness and mercy from the other one as I lovingly nursed it all the way home.

I probably went through the same kind of withdrawal pain and discomfort when I quit drinking coffee after the cancer diagnosis, but there was already so much other pain and discomfort going on from the blood clots and the treatment that the withdrawal stuff just mixed right in and went unnoticed.  Thankfully.

And for over a year during my treatment and recovery process I had no urge whatsoever to start the habit back up.  Until recently.

The tweet I sent when I decided to start drinking coffee again.

When the urge returned, it returned with a vengeance.

I started drinking it like I never stopped.  There was one big difference when I started back up though:

Decaf.

I know, I know.  Drinking decaffeinated coffee is like having sex without the climax. What’s the point, right? But, I figured, since I have to take an overload of drugs every day that are already throwing my mental state out of whack, it might be best not to include a stimulant like caffeine into the mix.

So it was decaf for the first couple of weeks.

Until the first time I ran out of it and mistakenly bought a bag of the real stuff.

Why would Starbucks make the bag green if it wasn’t for a decaffeinated coffee?

One good thing about drinking decaf coffee is that I can drink it in the evenings without having to worry about it cranking me up for an all-nighter.

I made the first cup from the mistaken identity bag around 7:00 pm. I think I finally fell asleep around 6:00 am the next day.  By 2:00 pm, I was back at the store buying real decaf this time, which was not packaged in a green-themed bag, by the way.

What’s up with Starbucks thinking they can set their own standards?

Caffeine + Prednisone + Mind Explosion

I have always been very sensitive to drugs and other foreign substances.  For instance, it’s hard for me to use morphine or codeine as pain killers because of this sensitivity (remind me later to write an article about my first experience with morphine…ugh).

Even caffeine in the smallest of amounts can overly stimulate me (it’s not often I get to say that out loud) to the point of annoyance to anyone who happens to be around me.

My daily cocktail of drugs are no exception to this sensitivity rule.

Evil Prednisone

Evil Prednisone

The biggest culprit from the cocktail mix for jerking me around is the prednisone.  Prednisone is the drug of choice, in fact, it’s just about the only choice, to treat Graft Versus Host-related diseases, of which I am suffering from, and for which I am taking the prednisone.

It addition to GVHD, prednisone is also regularly prescribed for many inflammatory-related illnesses, like asthma or COPD. Because of its potency, it is usually prescribed in low doses, around 5 – 10 mg, for short periods of time, around 7 – 10 days, or so.

Well, I started at 200 mg and now I’m down to 60 mg.  I’m going on my fourth month and, even though the treatment doesn’t seem to be slowing the advancement of my lung disease, unless there is a new miracle discovery, I will probably will be taking high doses of prednisone for the rest of my life.

Speaking of miracle discoveries, I will be participating in an NIH study in April 2011 for a new Lung GVHD treatment—fingers crossed.

It kind of freaks me out whenever I visit with a new doctor and their eyes widen and mouths drop when they hear that I’m taking 60 mg of prednisone every day.

The reason they react the way they do is because prednisone has a slew of annoying side effects and is one of those drugs where the cure could turn out to worse than the disease.  It causes bone density loss, diabetes, sodium retention, water retention, insomnia, moon face (for some reason it makes the body fat accumulate around the face—my head is friggin’ ginormous!), and worst of all, anxiety, depression, and mood swings.

What fun.

Because of my sensitivity to drugs, I seem to be really affected by the anxiety, depression, and mood swings.

You might be thinking, like I would be if it wasn’t me who was the one saying it: Brindley, get over it. It’s all just in your head.

And my response would be: You’re exactly right! That’s what makes it even worse.  I do know that it is all just in my head. But I’ll be damned if I can get it out.

The more I can keep my mind actively engaged, the better off I am.

This blog is great therapy.

So are naps.

But sometimes my mind gets stuck in a deep rutted ravine filled with all of my fears and doubts and I can’t get out no matter how hard I try.  It really is crazy because even as I am trapped in this dark place, I know that a big reason why I’m there is because of a drug that is supposed to be saving my life.

And once I get stuck there I usually can’t get out until the drug wears off, which is about twelve hours after taking it.

So, the next time I ran out decaf and decided to go to the real stuff, I had to take all of this into consideration.  I knew there could be consequences from the caffeine so, to try to make good out of my stupidity for willingly hooking myself back onto something I had not needed for over a year, I had decided to treat it all like an experiment.  When drinking caffeinated coffee while taking the prednisone and other drugs, which would be anytime I drink caffeinated coffee, I would pay close attention to how they interact and affect me.

Good idea, right? ;)

What I found is interesting and somewhat promising.

Pros:

  • Caffeine, like the true stimulant that it is, seems to balance out the negative effects of the prednisone. By drinking caffeinated coffee in the mornings when the drugs are at their nastiest, I do not seem to be feeling as depressed and grouchy.
  • It seems to be easier to breathe when I take my walks. After some research, I found that caffeine is a xanthine derivate. Xanthine is used to help treat asthma. Maybe this explains why it seems that I’m breathing easier on my walks.
  • Caffeine is a diuretic. Diuretics make you pee. This is useful for me since I tend to retain water because of the GVHD.
  • Because of the prednisone, I also retain sodium. I don’t understand all this diuretic stuff enough but it could be a good thing if caffeine is of the type that flushes out sodium. I’ll have to follow up with the doc on this.

Cons:

  • In addition to the depression, prednisone also makes me anxious and edgy, and increases my heart rate. Adding caffeine into the equation only amplifies that feeling.
  • Because of my GVHD, I have dry, itchy skin and my mouth gets dry easily. The steroids help, but since caffeine is a diuretic and I’m peeing all the time I get dehydrated quickly, which only exacerbates the dry skin and dry mouth. I have to drink more water to compensate, which means even more peeing. Its a tedious balancing act.
  • Again, I don’t understand much about diuretics, but I read that certain types flush out a body’s potassium. This isn’t good because prednisone already tends to decrease potassium levels. Need more info.
  • Because of all the meds I’m taking, my liver is really taking a beating. Since caffeine is metabolized in the liver, I really need to be careful here.

So, to make a long story short… What? Oh…yeah, I see. Too late for that. I guess I got to rambling a bit. Thanks for bearing with me.

Drinking Coffee With Shikibu

In conclusion…  better?  …my long, rocky love affair with coffee has resumed once again and I find that my passion for the drink is as strong and true as its seductive flavor is bold and addictive.

And now, not only do I drink the brew to fulfill my own selfish desires and dependency, I drink it also to fulfill a broader need, one with an utilitarian, more nobler purpose—I drink it in the name of medical research.

Just think, what started out as an aide to help me better defend my country during my navy years (that sounds much better than calling it a crutch to help me stay awake during boring mid-watches), may turn out to be the impetus behind a cure for a very serious mental health condition.

Now, whenever I drink coffee while strung out on prednisone, I may be one cup closer to understanding the longterm synergistic and psychological effects on the brain from simultaneously consuming large quantities of both stimulative and depressive agents over long periods of time.

My research is going to have an extremely significant and beneficial impact on the entire mental health community.  Better lives will be lived because of it.

Yeah, that’s all a bunch of BS, I know (see Disclaimer).  But hey, if it helps me to rationalize my pathetic, self-induced dependency on something that I probably shouldn’t be messing with in the first place, why not, right?

Have I mentioned how long it’s been since I’ve had a glass of wine?

Stimulating News

Ever since mid-December 2010, I have been getting light headed whenever I stand or lean over. A couple of times I have come pretty close to passing out. The last checkup I had the doc took my blood pressure lying down and it was 135 over 70 something. He then had me stand up and took it again. It was 110 over 60 something. A pretty significant drop.

One of the many side effects of prednisone, the steroid I take to try to stop the deterioration of my lungs, is that it causes sodium retention. Because of this, the wife and I have really been cautious about my sodium intake, trying to keep it as low as possible. The doc thought that my low sodium intake was causing the light headedness so he recommended that I up my sodium intake a bit to see if that helps. I didn’t think it was the sodium and I let him know, but I said I would give it a try anyway since that meant I could eat more pickles.

After having a couple of days to reflect, the doc decided he wanted me to take a Cortisol Stimulation Test, or Stim Test as it’s referred to in the business. Basically, all the test consists of is drawing my blood, testing my cortisol levels, then injecting me with something that stimulates my adrenal glands, and then at the 30 minute and 60 minute periods after the stimulation, drawing my blood and testing the cortisone levels again. Because the adrenal glands were stimulated, the level of cortisone should be higher.

I just received an email from my doc that says: Your Cortisol stim test was normal response. There is sufficient amount of Cortisol, according to the test, to protect you against orthostatic hypotension [dizziness].

That’s good news. However, even after increasing my sodium intake, I still getting dizzy when standing. Any of you smart people out there have any ideas what may be causing this? My gut is telling me it’s just a reaction to the cocktail of medicines I take every day but if you have any other ideas, please let me know.

Lung GVHD by Any Other Name

As I’ve tweeted in the past, I’ve contracted both acute and chronic Lung Graft Versus Host Disease as a result of my April 2010, Bone Marrow Transplant. For clarity’s sake, or perhaps to confuse things even more, I think it is important to be more specific in naming my lung disease. In my lab reports and in discussions with my doctors, in addition to Lung GVHD, it is referred to by several different names: Chronic Bronchiolitis; Constrictive Bronchiolitis; Focal Follicular Bronchitis/Bronchiolitis; but the name I will refer to it as is Bronchiolitis Obliterans, or BO. According to the doctors, it is the most correct name, and, most importantly to me, it’s the most fun to say.

Say it: Bronchiolitis Obliterans.

Wasn’t that fun?

I am not going to attempt to explain the disease in detail; however, what I will briefly say about it is that it a non-reversible, degenerative lung disease that compresses and scars the bronchioles which blocks, or obliterates, the airways. Unfortunately, there currently is no cure for the disease, but it can be treated with a high-dosage, anti-inflammatory steroid regiment.

I was also diagnosed with Acute Lung GVHD. Another name for this is Lymphocytic Bronchiolitis. Not quite as much fun to say as the other one is it? I have been on a steroid regiment since the end of October 2010, and the good news is I have positively responded to the treatment. My acute symptoms lessened as soon as I began taking the drugs. What a relief it was. Those who saw me prior to me starting the treatment can testify what a pitiful state I was in. In addition to the Lung GVHD, I also had skin, mouth, and lower GI GVHD. The steroids is taking care of them as well and now I have put on close to twenty pounds and I am getting stronger and stronger through stair climbing exercises and weight training.

Of course I still have the Chronic GVHD, or Bronchiolitis Obliterans, and always will; however, because I have responded so well to the acute conditions of the GVHD, the hope is that the steroid treatment will be able to at least stabilize my chronic condition and prevent or postpone for as long as possible, any further degradation.

Yesterday during a checkup with my GVHD doctor, I learned that I will probably be on the steroid treatment for the rest of my life. Not cool because the side effects are horrible; but, like I often have said about all the crap I put up with during the leukemia fight—it’s better than the alternative. I also learned that I will probably never again be able to return to work, or to a normal, vigorous lifestyle like I used to live. I don’t yet know what to say about this–I’m still processing the news.

I do know that exercise and a healthy diet is going to more critical to me now than ever before in my life. I need to continually strengthen and condition my heart and body so that it becomes as efficient and as effective as possible with limited and possibly lessening quantities of oxygen.

Bronchiolitis Obliterans.

At least it’s still fun to say.