Chemotherapy Leg Part 8

I'm receiving my fourth Taxol treatment today, which is my eighth total chemotherapy treatment. That means I've reached the halfway point, and I have only 8 more treatments left. 

It's funny how time seems to simultaneously fly by, yet stand still, as I've gone through this process. My week centers around Thursdays, when I have my treatments. Thursdays seem to come quickly, but the rest of the days of the week are a haze of fatigue, chemo brain, and lately, diminished sight. I'm not going blind, but I've noticed that my eyesight is a bit off, making it difficult to read things; not that I've been doing much reading - chemo brain has affected my concentration to the point where I can't read more than a few words at a time without going back over them. Writing these blog entries has become an hours-long commitment to going back and correcting my grammar and typos after compulsively re-reading my words to ensure that what I'm writing makes sense. You're not getting my best work to be sure, but at least I can articulate my points without sounding like "Mama June" Shannon as she attempts to deny that she's dating a registered sex offender who once molested one of her daughters. Talk about a case of chemo brain...

The realization that the remaining number of treatments is down to the single digits has lifted my spirits. There is a clear end in sight to this, and that is a positive. My mood, however, has been pretty low of late. I detest not being able to work, and hate the fact that I have very real physical and mental limitations. True, they could be much worse, but they still take their toll on my psyche. My biggest fear is that I will remain in a fog of befuddlement, unable to string together the words necessary to form coherent sentences. I have images of days spent prone in a recliner, watching hours of bad reality television and home shopping channels. I know that won't be the case, but when you can't remember your phone number, or whether or not you've flushed the toilet, it can be pretty unnerving. 

I'm going to keep it short today, mainly because I'm not feeling up to writing more. I leave you with this thought: Despite all the side effects and various other things I bitch about, there are cancer patients who have it much worse than I do. I feel for those people, and wish that their journeys could be easier. I show up at the chemo ward every week with my laptop and my lunch, like I'll be spending a few hours in my local Starbucks posing as a tortured writer. The truth is, I schlep my laptop and my lunch because it makes me feel "normal". We could all use a little more normal, whatever that might be for each of us. Sitting around while poison drips into your body is definitely not fun. Anything we can do to distract ourselves from that is time well spent. 

Nava

Chemotherapy Leg Part 7

Taxol treatment number three today, in what is an extremely quiet chemotherapy ward. I was just chided by my nurse for using the word "quiet" because as we all know, if you talk about something, the exact opposite usually occurs. 

In addition to currently undergoing chemotherapy for breast cancer, I am also a type 2 diabetic. Unfortunately, that condition runs rampant through my family, and I was not able to escape its wrath. I was officially diagnosed almost three years ago, and was given medication to regulate my blood sugar levels. I attribute this condition to a number of factors: one, I have a long family history of it; two, stress and certain life events worked in concert to corrupt my health; and three, I have a serious penchant for things like cupcakes that look like hamburgers (not to mention other culinary delights). 

I usually never refer to myself as a "diabetic", mainly because I've been hearing that term all my life. For me it has a negative connotation; I watched my grandmother shoot insulin into her thigh when I was a child, and I had to listen to my mother recall on countless occasions how she "had sugar" (otherwise known as gestational diabetes) when she was pregnant with me. Jewish women of a certain age love to complain about their ailments, and I've heard my share of kvetching. I kvetch on occasion as well, but when it comes to "sugar", I'd rather not talk about it. 

The reason I'm making this confession today is because the medications I've been getting supplemental to the chemotherapeutic agents have wrought havoc on my sugar. Steroids are known to sweeten you up rather dramatically, and they certainly did that to me. As a result, my family doctor raised the dosage of my medication, and my oncologist reduced the dosage of steroids I'm getting before my weekly treatments. Hopefully, the adjustments will not leave me feeling chronically nauseous, and my glucose levels will drop. 

Diabetes is a notoriously fickle condition, requiring most people to constantly check their glucose levels. For me, that would be like stepping on a scale half a dozen times a day. I'm reticent to do it, much to my doctors' dismay, and I am prone to ingesting the occasional "treat" which certainly contributes to the fluctuations. Again, I have clear memories of the urinalysis sticks my grandmother used, and today, we have television commercials to advertise glucometers that pharmaceutical companies try to pass off as cool "gadgets" everyone needs, kind of like smartphones. Maybe my decision to simply pop pills and hope for the best is a bit of a head-in-the-sand approach, but I've got other plans for myself. I don't want to mention them at this time, because, as I said earlier, when you talk about something, the exact opposite situation might rear its ugly head. 

I could go on about how the American food industry is poisoning us with processed foods and the seemingly unavoidable inclusion of high fructose corn syrup in everything we love to consume. I am guilty of consuming more than my fair share of crap, and maybe it contributed to my present medical condition, but I'll never be sure. 

The only thing I can do now is deal with my present situation and work to make it better in the future. Breast cancer was a much more startling wake-up call, because I always thought I would be the one who wouldn't be stricken. Unfortunately, cancer, like type 2 diabetes, is ubiquitous, and in my case, a double whammy. I'm doing my best to fight both, and I am hoping to emerge victorious. 

Nava

Chemotherapy Leg Part 6

 After today I will have 10 more chemotherapy treatments. In order to avoid redundancy, I'm not going to grouse about side effects unless any really odd ones crop up, which I'm hoping will not.

So far, Taxol hasn't been as brutal as the stuff I was getting, but rest assured, it's no picnic. To feel like "myself" has become a foreign notion; I'm assuming that I will have to get used to a new normal going forward, and that makes me sad. I haven't felt the need to mourn the loss of my breasts or my hair, but I used to be someone with no chronic health issues, save for the occasional ache or pain associated with getting older. Now, I think that phase of my life has ended. Chemotherapy will leave an indelible mark on me, sort of like a tattoo, but one that only I will know is there.

Speaking of tattoos, I was watching LA Ink on Netflix before it was yanked off the Web site without warning. I've noticed that tends to happen. One thing that would improve the service would be to warn subscribers how long the content is available for. That way, chemo patients like myself can budget how much time we need to devote to binge-watching before our chosen programs up and disappear. Believe it or not, it's important, especially for someone like me. When your livelihood is compromised by cancer treatments, you need to find other ways to occupy your time. Netflix has been a godsend. In other circumstances, it would be a gross dereliction of duty to spend so much time watching old TV series, (notice how I didn't refer to it as "procrastination"), but right now, I've got nothing but time on my hands.

Back to the tattoos. While watching LA Ink, I noticed that many people get tattooed to commemorate survival of a cancer diagnosis. I've toyed with the idea of getting a tattoo for a long time, and I came really close to taking the plunge about 4 years ago when I was living in Toronto, but for various reasons, I never pulled the trigger. Now, I'm thinking seriously about it again because, as I said, I am a different person, both physically and emotionally.

The question is, what sort of tattoo do I want to get to commemorate my own journey? It will for sure not be a pink ribbon or anything to signify any awareness of breast cancer. I've been thinking about a symbol of transformation like a butterfly or a moth, or maybe something more spiritual like a Ganesha, the Hindu god of success, pictured above. I haven't quite worked out the details, but I'm certain I'll have plenty of time to think about it.

I've written this while undergoing treatment, and right now, I feel like I've had one too many during happy hour. It's not the poison, but the antihistamine I'm being given to prevent an allergic reaction to it. The one thing you always have to remember during chemotherapy is that it might be killing you, but it makes you sleep like a baby; at least for a few hours.

Nava

Chemotherapy Leg Part 5

My tango with the Red Death has ended, and now I've moved on to Taxol, which is supposed to be a chemotherapy drug that is better tolerated than what I received during my first four treatments. It still comes with some interesting side effects, which might include tingling and numbness in my fingers and toes, along with fatigue, which I was told won't be as bad as what I've experienced, and the possibility of a rash or other type of allergic reaction. I'm not exactly jumping for joy, but if the next 12 weeks will be easier than the past 8, I will be profoundly grateful. In the mean time, we shall see. 

I've noticed over the past week or so that my chemo brain has gotten more noticeable; I feel like I have to concentrate very hard on doing things I normally take for granted. I don't feel 100 percent confident while driving, and I'm forgetting things. Moreover, I'm officially done with working for the time being, because chemo brain and writing for money don't mix. It doesn't mix well with reading, either, which is even more annoying because fall is the time when all the good fiction comes out. For now, I'm stuck with bad reality TV and a few quality shows. Could be worse; could be raining (Young Frankenstein fans should be laughing out loud or at least giggling at that one). 

The first phase of this treatment is a cocktail of a steroid I was taking in pill form, Zantac, which is an over-the-counter antacid, and Benadryl, an antihistamine. As I am attempting to write this while Taxol drips into my body, I feel slightly hung over, and in need of a nap. I still marvel at the drugs used to help offset the poison. Common over-the-counter medicine cabinet staples are ubiquitous in the world of oncology, and it's starting to remind me of new-age-y chefs and their quest to find ways to incorporate mundane ingredients to create new and exciting dishes. Chef David Chang comes to mind; he's on a never-ending journey to re-invent ramen noodles. If only a big bowl of ramen could cure what ails me...Yes, I am that into food, in case you're wondering why it keeps coming up in my posts. I have had some pretty hardcore cravings since starting chemotherapy. There might be a post to be written about all that. Stay tuned...

Pinktober is progressing, and it seems people are beginning to unpack the whole "awareness" message for what it really is. Social media is certainly helping on that front, with many articles written about the reality of where the money goes when we buy pink ribbon products, and donate to breast cancer charities. Two articles that come to mind are one about the ridiculously paltry amount of money that actually goes to research and education from the NFL's "A Crucial Catch" campaign, and the most outrageous one to date, The Susan G. Komen Foundation's "Doing Our Bit For the Cure" partnership with Baker Hughes, which is an oil drilling outfit that commissioned pink drill bits used for fracking. Many people thought the drill bit campaign was a hoax, but it does exist, much to the amazement of anyone with a brain. Fracking has serious environmental consequences that put many people in danger, and you'd be an idiot not to believe that environmental factors don't contribute to the occurrence of breast and other cancers. Why would a high-profile charitable organization like Susan G. Komen choose to partner with a company to pinkwash, of all things, drill bits? Ponderous, man...freakin' ponderous.

I'll leave you with this bit of advice: Think long and hard, and do your homework before you decide to donate to a breast cancer charity. I don't mean to sound like a broken record, but cancer is serious business. It makes many people rich, while it makes many more sick, and ultimately takes the lives of many more who succumb to it.

Somewhere along the way, we have forsaken what finding a cure really means. It's not about getting rich off good intentions; it's about helping people get through the challenge of dealing with an often fatal disease. Yes, science is finding ways to keep us alive, but there are still too many people whose bodies do not allow them to conquer the evil cells that can be relentless. No one should profit from the suffering of so many, and breast cancer should not be a capitalistic tool to churn profits for corporations throwing pink paint on anything and everything. I never thought I'd say this, but many charitable organizations are becoming as smarmy as used car lots and televangelist preachers who prey on vulnerable people who think God will help them if they open up their wallets.We need to re-engage with reality and be smart about how and where we choose to be charitable.

Nava

Pinktober

Since 1985, October has been Breast Cancer Awareness Month. It was established by the American Cancer Society and a now defunct pharmaceutical company that was absorbed by drug behemoth, AstraZeneca (thanks, Wikipedia). The "awareness" portion of the message has morphed into a marketing juggernaut, with so many pink ribbon products and charitable events claiming to donate money to breast cancer research, that critics have dubbed the month "Pinktober", and refer to the countless marketing campaigns as "pinkwashing". To use a popular euphemism, you can't swing a dead cat without seeing pink this month. I wish no harm, of course, to cats or any animals.

In years past, I did my share of pinking. I wore ribbons, I bought products, and I donated to charities. It felt like the right thing to do. Now that I am actually a victim of breast cancer, my attitude has changed. This is a familiar tune, because last week I wrote about how Joan Lunden's People cover attempted to make breast cancer seem like it's all about going bald. Turns out, the same holds true for all that pink stuff out there. A very small percentage of all the money spent on pink ribbon products, and raised by charities, goes to actual research and education. Moreover, many of the most high-profile marketing campaigns send the wrong message: Women are practically clubbed over their heads and lead to mammography machines by these campaigns, without any focus on what causes breast cancer, or what improvements can be made to current treatments. While it is true that regular screening is important in many cases, it is the misguided message of prevention that gets the most attention, not adequate medical care, or the mysteries of the disease science isn't anywhere near close to cracking.

Joan Lunden's diagnosis has had a polarizing effect on Pinktober. On October 2, the Huffington Post published a blog by a woman living with metastatic breast cancer who was recruited by NBC to appear on the Today show to kick off Breast Cancer Awareness Month. The one requirement was that she had to be bald, as this seems to now be the universal signifier of breast cancer. The producers of the show were looking for women rendered bald by chemotherapy to gather on the set in pink solidarity.

The author was told that she couldn't appear because the current photo she sent in showed her with short hair, not with a perfectly smooth bald dome, a la Joan, who has become the poster child for women in "warrior mode" fighting the disease. She and others wrote outraged e-mails to NBC, telling the clueless producers that not everyone loses their hair during cancer treatments. In fact, many of the drugs used to treat metastatic cancer do not cause any hair loss, something the knob-heads over at NBC didn't even think about. Like I said last week, this is all about appearances, not the reality of living with cancer and what the treatments actually do to you physically, emotionally, financially, and spiritually. In the end, NBC relented and allowed women who were not perfectly bald to appear in the segment. But, the damage has been done.

Charity is supposed to be a virtue. To help is a mitzvah, or a good deed. I still believe in good deeds, but I don't believe in buying yogurt, shoes, cosmetics, ribbons, and pins in the name of charity. Nor do I believe in putting a happy face on something as horrific as cancer. Like the woman who wrote the blog said, you might not want a side of metastatic cancer to go with your morning coffee, but we don't want to romanticize breast cancer by showing images of plucky bald women swathed in pink to make it seem like it's an invitation to a debutante ball. Our outrage about pinkwashing is just the beginning. We need truth and action. Thirty years of awareness has run its course.

Nava

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.

Nava

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.

Nava