Thursday, September 25, 2014

Chemotherapy Leg Part 4

Well, I've reached the final dance with the "Red Death" and will move on to the drug Taxol in two weeks. There will be 12 weekly treatments of that to look forward to.

I've been told repeatedly that the road will get a lot smoother from here, but I've got a healthy amount of skepticism about that, considering that my overall health and well-being has gotten progressively worse over the past six weeks. It will be a pleasant surprise to not feel completely debilitated and sick, so I will do my best to maintain a positive outlook going forward.

What I want to discuss in this post is the proliferation of breast and other cancer tales told by celebrities and the pertinent details that are left out of those stories. The latest tale is being told by Joan Lunden, who was diagnosed with triple-negative breast cancer, which is the kind that is not driven by hormones (I have the hormonal kind). Lunden's form of cancer can be quite aggressive, and she is likely undergoing a treatment protocol that is equally as aggressive - as you can see by the image of the People magazine cover I've posted. She has, of course, decided to go public with her battle, and like other celebrities, she is doing so with a smile on her face, a perfectly airbrushed bald pate, and flawless makeup. There was a time in my life when something like this would not have bothered me, and I would have thought, "Good for Joan; she's fighting the good fight." Now that I am going through something similar, my attitude has changed.

Having cancer is not pretty. It is downright ugly both inside and out. Celebrities, public figures and even health care professionals try to dress it up and make it more palatable, but the reality is, it's profoundly awful. No amount of technology or cosmetics can hide the fact that if you have cancer, and are undergoing treatment, it sucks to be you. Being bald and not having breasts is the least of it; the obvious signs of the disease pale in comparison to what the treatment does to you in the effort to eradicate it.

Instead of reading about hair loss making her feel "less feminine, pretty, or desirable," I want to know what's going on beyond the superficial side effects. What I've learned since embarking on my own cancer journey is that what happens in addition to hair loss is what really tests your mettle. When those side effects present, you want to know that you're not the only one having such an horrific experience. For example, how tired is Joan? Is she able to get out of bed for extended periods of time after her treatments? What does her food taste like? How is she coping with chemo brain? Does she have any gastrointestinal distress that makes it impossible to be more than ten feet from the bathroom?  Does said gastrointestinal distress make her sob on the toilet on occasion? I don't see Joan, or any other famous person addressing any of these, or similar questions.

What bothers me is that as long as it looks good, the ugly stuff can be swept under the carpet. We need to pick up the carpets and talk about the stuff lying underneath them; the vast majority of us don't land on magazine covers where the world can read about our warm and fuzzy warrior tales. Mere mortals like myself are the ones who can't get out of bed for too long and sit sobbing on the toilet because our stomachs are killing us. Maybe if a celebrity told it like it is, we wouldn't feel so bad about going through all this. Instead, we feel bad because our heads aren't perfectly bald, our skin isn't flawless, and we don't really feel like warriors. We feel like shit.

I have three more months of chemotherapy to get through, followed by six weeks of radiation after that. With four treatments already under my belt, the journey is a bit less daunting, but the road ahead is still a long one. I wish Joan Lunden well, as I do other people who are dealing with this disease. I also hope that I will read more of the "real" stories people have to tell, rather than ones that are made up of fluff and feathers. Let's try to keep it real; the realer it is, the more we learn. And the more we learn, the more we can do to remove the scourge of cancer from our lives.


Wednesday, September 17, 2014

Chemo Brain and the Nose That Took Over the World

If you've been reading this blog faithfully, you've seen me mention the term "chemo brain" on occasion. The best way to describe the feeling is a general state of befuddlement, coupled with a sense that you aren't quite sure where you are, or why you are for that matter. It's not a pleasant state to be in. Moreover, for someone who earns a living as a writer, it can be downright prohibitive. No one really expects anyone undergoing chemotherapy to be able to work, but writing is not always working; taking away a person's ability to string words into coherent sentences can be tantamount to taking away one's ability to breathe. 

Speaking of breathing, there is one rather pernicious side effect to the "dark days" of chemo: your sense of smell goes absolutely haywire. This too can be hell on the psyche, mostly because anything and everything smells terrible.

Like many other experiences I've been having since my cancer diagnosis, I find the smell issue to be rather ironic. In a former life, I had quite an extensive perfume collection accumulated over many years, which was unethically disposed of by someone who did not appreciate the art of a fine scent. I've harbored a slew of bad feelings over that event, and having to endure everything smelling like a cess pool at high noon has regurgitated them in a most unpleasant way. When you must lie in a dark room with the door closed in order to avoid even the most innocuous of odors assaulting your poisoned senses, your thoughts take over, and you can't avoid wishing that the world looked and smelled a little rosier. If the smell of fruit-scented hand soap, freshly brewed coffee, and even freshly laundered clothing makes you retch, life is most certainly at a low point.

My chemo brain, my altered sense of smell, and the rest of me are not happy campers these days. Try as I might to find humor in all this, I wonder if I will ever see a time when cancer treatments will not involve vile chemicals that reduce one's physical and emotional states to rubble. Or even better: let's figure out how to prevent or maybe even cure this insidious disease.

What I'm learning is that the outward side effects of chemotherapy are really the ones that are the easiest to digest (pun intended). I can deal with being bald and pasty, but I can't deal with a malfunctioning brain and everything smelling like shit.


Thursday, September 11, 2014

Chemotherapy Leg Part 3

Here I am for my third chemotherapy treatment; round three of the "Red Death". Yesterday, after getting my blood work done, a physician's assistant told me that if I was hoping my profound fatigue and other side effects were going to improve, I would be sorely disappointed. I normally appreciate it when people don't bullshit me, but if there is anything I wish I could stick my head in the sand about, it's this ordeal. Instead of noxious chemicals dripping into my bloodstream, I'd much prefer something along the lines of a rich Cabernet and a liquified Porterhouse steak. Then, the only side effects would be a bit of indigestion. But I'd feel damn good; of that I am sure.

What's interesting about today's treatment is that it is taking place on September 11. All day, I've been thinking about what I was doing on that day, as well as where my life has taken me in the 13 years since. Not once during that time did I ever think I'd be diagnosed with cancer (really, who thinks that?), but I watched other people suffer with the disease, and a few lose the fight. On September 11, 2001, many people lost their lives, and I can't help but think about how their lives would have gone had they not been on those planes and in those buildings on that fateful day.

Going forward, I am desperately trying to stay positive despite what's been going on in my life for the past few months. As I said in my last post, many friends have gotten together to help me through this, sending me hats and other things, and offering loving words of support and encouragement. Without them, this would be much, much harder than its been.

I'm finding it hard to string together many words today. I keep wondering whether it's ironic or apropos that I am undergoing chemotherapy on this day, since it is one of somber reflection and remembrance. I hope that one day, I will look back on this experience and be glad that I went through it, but my mind will always come back to this date and never forget what happened in 2001, and where I was on that day, and on the same date in 2014.


Monday, September 8, 2014

The Beanie Brigade

In three days I will undergo my third chemotherapy treatment. My time since the last treatment has been spent trying to come to terms with the fact that there have been more bad days than good, and that this scenario will likely continue.

Two days following the last chemo I decided to do away with my swiftly disappearing hair. I can't think of anything more disconcerting than watching your hair fall out rapidly and in abundance. I know there are men out there who understand what that's like, but that type of baldness is a progression, not an instantaneous event like what happens when your hair follicles decide to revolt en masse as a response to poisonous agents coursing through your body. To say it was disconcerting is an understatement; watching your skin melt off your body is the only worse thing I can think of.

So in response, I decided to do the cut/buzz: My remaining hair was chopped off, and the rest buzzed down to fuzz until the chemicals decide to eradicate it entirely.

As a knee-jerk reaction, I went to the Web site of my favorite department store and created a wish list of knit beanie hats that I wanted to purchase to cover my bald (not to mention freezing) head. I have many Facebook friends who are into fashion, accessories, perfume and the like, so I made the list public and shared it on my page.

What happened next came as a complete shock to me: a group of friends decided to purchase most of the hats on the list. In addition, one other friend sent me a selection of hats, a scarf and other goodies just because. I was awestruck by the outpouring of love and generosity these friends displayed; some of whom only know me online, or met me only briefly in real life. The day all the hats arrived was one of the good ones, and I will remember it always. In my former life, I would have been the beanie-buyer; now, I am the beanie recipient. It is an interesting role to fill, and from a spiritual perspective, it makes me feel grateful, and well-loved.

Anyone who knows me well knows that I've been knocked around a bit by people I thought loved me and cared about me. I used to call those people "family". Now, my "Beanie Brigade" is my family, because they joined forces from all over the country to lift my spirits and make me feel better. Going forward, my poisoned hair follicles will be fashionably covered in love, and some very snazzy hats.

My love and thanks to all of you.