The Gift

These are dark days. The last two weeks have been somewhat challenging in strange ways. Upon completion of brain radiation therapy, my physician  prescribed steroids to help me with symptoms of brain swelling which include nausea, headaches, loss of appetite,  mild combativeness, and debilitating fatigue. Unfortunately, the side effects of the steroids are almost worse. They jack me up, take away the nausea and diminish the headaches and send me into a state of mania. The good news is my house is clean, my kids are in line, and there are plenty of hours in the day. The bad news is, it sucks. After day one, I said, "screw it." I decided to forego the steroid storm. I was immediately engulfed with nausea, headaches, fatigue and a pain in my right shoulder due to a previous kayaking injury that refuses to heal. I'm tired, REALLY tired, and it's tough to overcome the urge to just stay in bed all day. However, to me, that's kinda like quitting, I REFUSE to quit. Sure, there are days when 14 hours of sleep are welcomed and acknowledged, but there are also lots of amazing friends coming to visit, warm sunny days, a very inviting swimming pool, and kids who need to learn stuff.This is probably the worst possible timing to learn how to homeschool your kids, but hey, I never liked starting at the bottom anyway. Radiation therapy has a side effect of short-term memory loss, so I have to step up my game. My girls have been super rockstars, committing to their studies and tolerating their mom who likes to write impossible quizzes. However, the preparation and execution of providing a learning environment, weeding through curriculum, and learning to teach has been a great distraction from feeling crappy. As we trudge our way through pacing curriculum and resisting the urge to bake during  school hours, I can't help but wonder if this a good idea or a bad one. Homeschooling was going to be challenging enough all on it's own, but with a cancer diagnosis, it's a whole new way to level up. For me, It works. I spend the weekends coming up with the plan, spending extra time revising and trying to align one daughter's studies with the other to make it easier to teach. It has turned out to be a great way to feel useful as being a cancer patient can sometimes make you feel like a burden. It also distracts from the nausea, requires little physical effort while fatigue takes its toll, and keeps the grumpiness at bay. But it's not just about me, which is why we have certified teacher to monitor our progress and make sure that all three of us are achieving our goals and working towards a High School Diploma.

The side effects remain but I can handle those. The most irritating thing is my left eye. One of the cancer lesions is located just behind my left retina. It leaks fluid which distorts my vision  tremendously. My right eye does overtime to compensate and the end result is a bad case of vertigo and an inability to find anything, specifically the glasses I need to find stuff. Combined with the short-term memory loss, this has become a serious problem. If I put something down somewhere such as my phone, I spend the good part of the day "looking" (groping) around for my glasses and ultimately my phone which wastes precious time I could be spending doing something far more satisfying. Meh. It is what it is. I just have to work the problem and find a solution such as leashes for both my phone and my glasses. However, despite finding this solution, I am unable to drive to the store to obtain said items because, well, I'm blind. Ish. Radiation therapy should have killed that stupid lesion in my eye, but it is taking it's own sweet time. As I journey into Phase II of treatment, I am REALLY looking forward to literally watching this lesion shrivel up and die. Until then, I have littered my house, my purse and my nightstand with high-powered reading glasses.

Despite having the proverbial equivalent of sticking my head in a microwave, I remain capable. I'm kinda psyched about that. I can still form a complete sentence and fire off a witty one-liner or two. Sometimes I get a blank stare but I chalk that up to evolutionary superiority rather than brain mets. Some people just don't get me. That's okay. They usually try not to say much because I have brain mets and it is presumed that I will die soon anyway, so nobody gets in my grill. It's sort of a cancer perk, and sometimes I use it to amuse myself .

Today is exciting because it signifies the next phase. It also scares the hell out of me. Chemo is no picnic. I've been there, done that, got the T-shirt and I know almost EXACTLY how much it's going to suck. That said, nobody likes a negative Nancy so I gotta figure out a way to make this fun. THIS is the true challenge of chemotherapy, and this is the reality of the rest of my life. I have come to learn there is a gift in every adverse circumstance.   For real. To survive such adversity, one MUST look for the gift. It is unimportant that you find it. It's the looking for it that changes the game. Originally, chemo was not part of the plan. Chemo does not cross the blood brain barrier so it wasn't expected that chemo would be part of the plan. However, because the metastasis has spread throughout my chest, pelvis and abdomen, chemo is now.... the plan. Cancer 1 Tori 0. Despite this, I happen to know that chemo will obliterate the nodes positive in my body. As a bonus, cancer tends to disrupt the blood brain barrier on its own so SOME of that nasty stuff might leak in to those brain lesions and put the last nail in their certain coffin. The other meds I'll be getting are specific to my HER-2 positive cancer and a death sentence to any cancer remaining. This is the gift in all of this. The disintegration of my cancer resulting from said chemo and said adjuvant treatments means all of these annoying symptoms get better. My eye goes back to being my eye, the nausea resolves, the headaches diminish and  I return to a new normal baseline. Utopia.

As a nurse, I know that Utopia is temporary and not always how all of this goes down. There are glitches, uncertainties and just plain bad luck. It is possible that I won't respond and if I do, it is also possible I will stop responding at some point. My Oncologist has a litany of "back up" plans. He is preparing for Phase III before Phase II even starts. He is miles ahead on what could happen and he is not to proud to collaborate with sources such as M.D. Anderson Cancer center (Texas) and Memorial Sloan Kettering Cancer Center (New York). He is my ace in the hole and my life is in his hands. He works hard for me, which translates to helping my husband and kids and anyone else that might care for me, so it's my job to make is his job as easy as possible.

Today, I have a very big day. Blood draw at 8am, Doc visit at 9:15am, surgery for access Port placement at 10:30, then chemo and adjuvant treatment at 2:30 which lasts 5 hours. It's a doozy, and it weighs heavy on my mind. Where is that damn gift? Why is it so hard to find? Often, it's a matter of breaking the problem up into smaller parts. I just breathe and take it as it comes. Much like war, fighting cancer has no certainties, no predictability. It fights back in ways unanticipated. I am desperately trying to outwit my opponent but it does not make it easy, and because cancer is composed of my own broken cells, I am proud to say that it fights like a beast. I am my own worst enemy. But I fight like a beast too, and I have goals. The plan for now is to do chemo and adjuvant therapy. I will receive 5 hour infusions every week in San Francisco indefinitely until I beat the beast back. Looking forward to THAT news with great anticipation. If anyone out there knows how I can get my own parking spot near 1600 Divisadero, that would be a tremendous  gift. Parking is a bear.

Until then, I have enough to keep me busy, and ultimately my husband running. With a new Stage IV diagnosis, I am pulling out my Cancer Card and going shopping so if any of you want to offer up something amazing, I am in. You won't believe what a bald head can do in a pinch. Nobody likes to say no to a cancer patient. And if they do? Well, they have bigger problems than me, and probably deserve them because they are just plain mean. They don't see the gift. Ever. That's very sad but also much bigger than me and I've got my own fish to fry.

Right now, I feel very small. The mountain I have to scale seems enormous. Fortunately, I've climbed mountains before and I have stood on top. The journey of a thousand miles begins with one small step so that is where I must start, at the bottom, with one small step and bunch of really great people cheering for me. I will not quit which will be very exasperating to many because I will keep bushwhacking, throwing rocks, shoveling snow, and taking yet another step. I will NOT be stopped.

Thanks for reading. As you can see, writing about my journey is a pressure valve release. It's stream of consciousness, poorly organized, and often just too much, but it releases some of the negative energy and is a gentle reminder of where I've been and where I'm going (I read them weeks later). More stories to come.

"Hangin' on the promises of the songs of yesterday. I've made up my mind. I ain't wasting' no more time. Here I go again...."  Whitesnake c. 1980