Are we there yet?

I've been receiving a lot of great support via Facebook, email, texts, etc., and I love it. I love the random reach out: "Hey, haven't talked to you in months but just wanna check in and see how things are going'? It's so cool to me that out of nowhere I manage to streak across someone's mind with enough umph to generate a thought and maybe even a message via the internet. Life is busy and my age, experience and people and logins and passwords tend to pile up. How cool is that when you pop up in someone's head at random?

Trust me it's cool.

I won't dwell on my situation but a lot of people are either tentative to reach out, imagining me parked in front of the porcelain bus with goobers coming out my eyeballs or peacefully slumbering in bed like Rip Van Winkle waiting to wake up after the crisis of this cancer business. It's a pretty big continuum, you must admit. People handle personal challenges in different ways. Once the initial shock of diagnosis, worst case scenarios and treatment options wore off, it was back to life as usual. Well sort of, only with different goals. If you wonder what I'm going through, maybe this post will clear that up a bit.

First, I do a lot of virtual work. You know, Facebook, Email, Texting, Movies, Netflix.... Thank goodness for technology! I stalk all of my friends traveling to Paris or Park City or wherever. It conjures up memories of great times had in those places or it puts another destination on my future bucket list. I might even engage in some surly post-election debates just to see if I have the brain cells to stand on my own two feet. So far so good although given my situation, not to many people have accused me of being dense for fear of being cruel. By the way, thank you to all my smart friends for cutting me the slack.  And that's my life. It's great. I am charged with nothing but surviving. It's pretty cushy actually.

Second, I manage the unpleasantries. These include daily bloody noses, of unknown etiology. They are minor but they are usually most prominent when I change into a clean white shirt.  Then there is the peripheral neuropathy which is a nerve issue that causes the hands and feet to sort of "prickle." The hair loss is an easy one but the fingernails, toenails and cuticles are tough to manage. They don't fare well in a cytotoxic host and that also causes some maintenance issues. Luckily, my platelets remain within normal levels, so management of peeling skin and bleeding nasal passages is not life threatening. I also suffer cold intolerance which is not handy as we come into wintertime. I'm often dressed in multiple layers including fleece, down and furry hats. I am often mistaken for a homeless person or a Russian tourist.
My second least favorite side effect is the ever present mucositis. Cancer by definition is a group of rapidly dividing cells that grow out of control. The gastrointestinal tract is composed of rapidly dividing cells that the body is constantly producing. Chemotherapy attacks rapidly dividing cells (cancer and regular) and obliterates them, so the gastrointestinal tract is constantly turning over. Over time, this causes some rawness and difficulty, hence frequent nausea, vomiting, and discomfort. It's hard to swallow and digestion is a new experience that ends with more unpleasantness on the other side. I am happy to report that I still have not vomited from chemo thanks to the excellent treatment I am receiving, and the counseling the nurses provide. Most of this is centered on how to eat, when to eat and how to keep from slipping into the nightmare of a digestive system that shuts down completely. The metallic tastebuds don't help this process and there are days when food is downright repulsive. I have to coax my digestive tract to cooperate most of the time with a teasing of a cracker or a bowl of broth. I am thus far, successful (lucky is a better descriptive), but I fear that 9 more weeks will have increasing difficulties with eating.

My goals are to keep my white cells working, my platelets up, my neutrophils down and my liver enzymes strong and healthy (Milk Thistle tea anyone?) and WITHOUT Big Pharma's assistance. I do this through nutrition, drinking lots of water and avoiding anything that messes with my brain, my liver or my lungs. It tends to be a full-time job. I could take the easy road. I am prescribed a cornucopia of anti-nausea medications, pain medication, neuroprotective meds, steroids, anti-inflammatories and anything else I want, which includes the countless offers of Cannabinoids and their varying dosages and  delivery systems. Yes, I have those too, and for now, they are for emergency use only.

Why?
Faith, but not the faith you think.

The human body is an amazing organism. It can adapt to the harshest of conditions. Right now, I am asking it to adapt to being poisoned on a weekly basis. On Toxic Tuesday,  I get pre-meds (medications before the medications!) to reduce the potential sensitivity issues that the poison instigates. These include IV Steroids, Benadryl and Pepcid. It jacks me up and makes me restless. I call it my weekly Red Bull and Vodka. After that, I get the chemo poison. Every third week, I receive two more medications that attack my cancer cells directly via an antibody treatment. Side effects aren't awful but the fact that they are infusing more chemicals into my system means my body has to work overtime. If you consider that all of these drugs are killing cells, both my good ones and cancer's bad ones, there's a lot of bio-garbage swirling around my system. I'm sure you can understand why I really don't want to take any other chemicals with differing side effects, to manage the chemicals that are trying to poison me. My body can do this on its own as long as I treat it gently and maintain FAITH. This means no stimulating inflammation of any kind. Training is out. Exertion is out. Sugar is out.

Of all the effects, it is the fatigue that reminds me, daily, that I am in treatment. Some days, I can go a full two hours and others, I do not make it out of bed. I have tried dogged, stubbornness to push through these days and despite my efforts, I sink deeper into a hole of pseudo-paralysisand ultimately defeat. Fatigue is not "sleepy." It is not "tired." It is as if someone has placed the entire world on your shoulders, turned up the gravity and said, "do twenty jumping jacks." It is the equivalent of being 9 months pregnant, dehydrated, and climbing Everest at about 20,000 feet. It is crippling exhaustion that accumulates without recovery. 2 hours of overdoing it buys me a full extra day in bed. Napping doesn't help because it's not "tired" nor "sleepy." It is paralysis. It is a cruel penance for a regularly active person and a lesson in humility.

The world spins wildly outside of my bubble. My girls have their marching orders for school and soccer and voice lessons and photography and community service and Marek continues to work while shuttling kids in between conference calls. It's hard not to get sucked in. It's hard to say no while they all toil and scramble to meet their needs, and I have to remind myself that rest has value.

All of this works hard on my psychological outlook. While I work through the week to maintain nutrition and recover, the next treatment looms. Just when I cajole my body into recovering from the previous Tuesday's poisoning, it's time to go back and start over. Each week the climb gets a little harder. I have ten more chemotherapy treatments, so the count is on. Scans in March should tell my fortune for longevity. Most recent scans confirm at least another year if not three. I'm shooting for five and hoping for ten. For now, I'm just happy to get to Monday.