More of the Ugly side of this Diagnosis

Through this entire ordeal, I have tried to look on the bright side of things.

Yesterday, the only bright side was at the bottom of the toilet bowl.

I started the six months of chemo, and suddenly, I was barfing over and over and over and over again. I hurled nine times within three hours. The same medication that I have been taking suddenly made me a puke machine.

I talked to my doctor (Reminder: Don't be Dr. Google!).

Evidently, this is not unusual when moving to this round of treatment, but they did want me to go to the cancer center for infusions. They pumped me full of fluids and anti-nausea medicine and sent me on my way. Nobody was worried, which was a good thing, because that helped me relax just a little in a very stressful situation.

This means, though, that I need to adjust how/when I take my meds, when/what I eat, and when I sleep so that I can figure out what my new normal will be.

My therapist once told me that she hates the term "the new normal." I have to say that I agree with her. Things are constantly in flux, swirling in the chaos that is life. We may become accustomed to one form of this chaos, but one thing is always for certain (especially with this diagnosis): Don't get too accustomed, because things are always just on the brink of change. We all have to be prepared for that, because the change may be positive, like a cool new haircut or it may be negative, like hurling for three hours in the middle of the night.

Historically, I've tried to be brutally open about my journey with glioblastoma. I have tried so hard to be more than just my diagnosis, but simultaneously, I have tried to explore and explain my journey, in the hopes that perhaps this voyage can be just a little less difficult or frightening for anyone who might be sailing through these stormy seas.

Full disclosure, though: I have NOT been 100% open about my journey.

You have seen my First Face. That's the easy one.

I have worked really hard to show you as much as possible of my Second Face. This is really challenging, because I am not accustomed to opening myself up to the vulnerability involved in being so exposed, especially when things get ugly.

The reason I have not been 100% open about my journey is because my Third Face needs the time to process information, to make decisions, to determine what kind of access my Second and First Face have to my innermost feelings that make me who I am. My Third Face is mine. This means that although I have been chronicling this journey, this does not mean that any individual person has a right to see my Third Face (or even my Second).

This journey is incredibly difficult, moreso than I let on much of the time. I try so hard to inject my own inappropriate and morbid sense of humor to this little piece of hell, because if I can't laugh at or mock my cancer, what can I do? But please remember, my Third Face is mine.

So there you have it. Opening up my Second Face is very difficult. But I think that it is important that people who see my First Face understand that, although I might make light of the situation, my Second Face is showing you that this is hard. Harder than you know.

How can you help?

Wake Forest Second Opinion

So last week, The Husband drove me to Wake Forest Something Something Cancer Center up in North Carolina to get a second opinion and find out if I'm a candidate for clinical trials.

The second opinion is that I do in fact have brain cancer, and the primary oncologist's plan is a good one. I responded so favorably to treatment that I'm not eligible for any trials, but I do need probably six more months of chemo with scans of my brains every however many weeks.

This is good news, right? 

The whole not being a candidate for trials is because right now my tumor is tiny. Tiny enough that there is not enough to measure and get good data for those clinical trials. Once it gets back to a certain size, then they can test whatever it is that they test to see how fast it makes it shrink, or if it makes it shrink at all.

So.

Good news, right? But it does mean six more months of waiting to find out if when the tumor will grow back.

I hate waiting!

Books: Everything Happens for a Reason and Other Lies I've Loved by Kate Bowler (Part 5)

So let's continue talking about the cancer book. As a reminder, here's what I've talked about so far: I told you some before stories. I talked about the American Dream. I talked about Today. I talked about grief.

Everything Happens for a Reason by Kate Bowler

I didn't realize until I read this book that I felt like I deserved this condition. Like there must have been something that I had done, thought, said, imagined, that made this make sense. Even though I knew (and know) that life isn't fair, I still felt like this was something that I had coming. Like the title says, everything happens for a reason, right? It's just karma.

But what if I changed my perspective on this?

Instead of deserving an incurable cancer, essentially a death sentence, maybe I need to look at this as simple bad luck.

I mean, it was simple good luck that I just so happened to not be working for the summer, and the reality is that if I had felt these symptoms that sent me to the hospital while I was teaching, I would have ignored them, because it is far too important to teach my weird awkward and awesome students how to write essays. My diagnosis would have been delayed. The fact that I did not have classes for the summer may very well have saved my life. Simple good luck.

So, sure, it is bad luck that I am one of the however many who get this particularly sh*tty form of cancer. But I don't deserve this bad luck. I don't think I deserve this bad luck.

If I don't deserve this, and this didn't happen for any reason other than bad luck, that leads me to decide that the universe is a chaotic place, and some people get hit by the chaos harder than others. The universe is not out to get me. I didn't deserve this. It isn't fair that this happened to me, to us. Sometimes, these things just happen. And I'm allowed to feel sad about that.

That's it.

So, I'm done with this book. It was really quite good, and I do recommend it. What book shall I read next?

Books: Everything Happens for a Reason and Other Lies I've Loved by Kate Bowler (Part 4)

So let's continue talking about the cancer book. As a reminder, here's what I've talked about so far: I told you some before stories. I talked about the American Dream.  I talked about Today.

Everything Happens for a Reason by Kate Bowler

This book led me to do far more introspection and self-analysis than I ever expected. My therapist mentioned to me once that one reason she got into oncological social work is because she found her patients discovering their best selves at the worst of times. I can't remember if I've mentioned this before (I have a really good excuse (it's brain surgery)) but it's something that stuck out to me. The weird thing is that even though I have people telling me that I'm so strong, so brave, so inspiring, I don't feel any of that. People tell me that they see the best parts of me, and I struggle to accept that when it feels like nothing more than a facade. It's like wearing a mask. Everyone else can see what is on your face, but you can't see your own face, hidden or not.

Instead:

"There is an inchoate sadness in the pit of my stomach, hard to express" (Bowler 102).

Down in the deepest and darkest corners of my heart, I am still grieving for my future unmade and dreams dismantled. I am still grieving for an extraordinary life made ordinary. I am still grieving for a Me who is no longer Me. This grief is all-encompassing, all-engrossing, all-consuming. I'm not screaming and crying anymore. Instead, I've reached the stage of grief that is still and unmoving, ever-present, hovering quietly over my shoulder.

I grieve for the students I'll never get to teach. The adventures I will miss out on with The Husband. The extraordinary. The time that I thought I had.

"I used to think that grief was about looking backward, old men saddled with regrets or young ones pondering should-haves. I see now that it is about eyes squinting through tears into an unbearable future. The world cannot be remade by the sheer force of love. A brutal world demands capitulation to what seems impossible—separation. Brokenness. An end without an ending" (Bowler 70; emphasis added)

I am 38 years old, and until very very recently, I did not feel 38 years old. In my mind, in my soul, I am still that invincible 25-year-old that packed up my crap and moved to Texas sight unseen because I needed a change of scenery. I am still that awkward 16-year-old who dressed up as the road (all black clothes, two white stripes of tape, get it?) for Halloween. I am still that 28-year-old getting married in a courthouse and feeling the joy of forever in front of us. I am still that excited 34-year-old getting my Master's Degree and feeling excited to finally be able to work with my passion, finally able to work my dream job.


I look back, and I have very few regrets.

I look forward and I grieve.

Books: Everything Happens for a Reason and Other Lies I've Loved by Kate Bowler (Part 3)

So let's continue talking about the cancer book. As a reminder, here's what I've talked about so far: I told you some before stories. I talked about the American Dream. Now let's talk about Today.

Everything Happens for a Reason by Kate Bowler

Not today, specifically, but the idea of Today in general. Today, you woke up with a list in mind of things that need to get done. Pay some bills. Feed those children. Work that job. Scrub the floors. Work that second job. Work out. Eat a meal. Hug those children. That's just for today.

"I am stuck in present tense. With a scan around every corner, I have lost the ability to make extended plans, to reach into the future and speak its language" (Bowler 143).

Today, I wrote. I rested. I begrudgingly allowed myself time to recover from the hell that is chemo/radiation lingering side effects AND multiple prescription medication side effects. In several weeks, I have a follow-up scan. Until then...

No plans.

No anticipation.

No social schedule.

Nothing.

I can only process one Today at a time. I might plan to see my HeteroLifeMate* tomorrow, but Today, I don't know if I'll have the physical or emotional energy to see this beautiful beast.

I'm not an alcoholic, but I have to learn to take things one day at a time, and that is just so frustrating.

The last time I went out with friends, I had a panic attack in the middle of the restaurant. How does a person make plans when I can't even trust my own body to do what I ask of it? When will I be able and willing to try another social outing again?

Not Today.

"[M]y own suffering began to feel like it had revealed to me the suffering of others, a world of those who, like me, are stumbling in the debris of dreams they thought they were entitled to and plans they didn't realize they had made" (Bowler 121).

It is so easy to feel like we are the first and only ones to suffer our particular trials. To feel alone in our tribulations. Even though this book wasn't exactly made for me, it helped me to understand that, whether it's brain cancer, breast cancer, bowel cancer, or anything in between, we are all struggling to clean up the debris of a future unmade and dreams dismantled.

What does this mean to me now?

Now, I need to learn to remake my future with grace and forgiveness of my own body that betrays me every Today. I need to learn to build dreams that take into account the abilities of Today's Melissa. Today, I need to learn how to plan when I can only be certain of one Today at a time.

*Best friend from college, celebrating TWENTY years of friendship because she is OLD.

Books: Everything Happens for a Reason and Other Lies I've Loved by Kate Bowler (Part 2)

So let's continue talking about the cancer book. As a reminder, here's what I've talked about in Part 1. 

Everything Happens for a Reason by Kate Bowler

I told you some before stories. I don't want to talk about after stories yet. Instead, I want to talk about the American Dream.

"Fairness is one of the most compelling claims of the American Dream, a vision of success propelled by hard work, determination, and maybe the occasional pair of bootstraps" (Bowler 7-8).

The thing about the American Dream is that we all know that if we work hard, we can and will succeed, right? It's only fair.

But also, we have all heard that life isn't fair, right?

So how do we reconcile these conflicting ideas?

This is the hardest part of having an incurable cancer. I've worked hard. I've been determined. I haven't pulled myself up by my bootstraps because that is impossible, but I have done all those things you are supposed to do: got my education, got a good job, got The Husband, got to travel, got to have adventures, and generally got the American Dream. This life certainly hasn't been easy, but karmically speaking, I have felt like most of it made sense.

And then Diagnosis Day happened.

For the first time, I found myself thinking, saying, screaming, "It's not fair!"

Frankly, I never really actually thought that life was fair, but I never expected it to be so monumentally and fundamentally unfair.

This whole American Dream leads you to believe that if you work hard, you'll succeed. Logically, this means that if you don't succeed, it's because you didn't work hard enough; therefore, you deserve your failures. To follow this logic through, it means that I and every one of you deserve the doo-doo that you get, because if only you had worked harder and been a better person, this wouldn't have happened to you.

But I see too many bad things happening to truly good people. I have trouble really believing that any of us deserve any of this. So what does that say about the American Dream?

Books: Everything Happens for a Reason and Other Lies I've Loved by Kate Bowler (Part 1)

Guys, guess what! I finished another book!

Everything Happens for a Reason by Kate Bowler

Until this point, I've avoided reading cancer books because I am far too much of a sarcastic jackass to be able to take their approach seriously. See, I know my condition is serious, but if I can't make fun of it, what can I do?

My therapist recommended this book to me, and because I absolutely judge books by their covers, the title drew me in immediately. So, if you are as curious as I was as soon as I saw the title, here is the blurb from Amazon:

Kate Bowler is a professor at Duke Divinity School with a modest Christian upbringing, but she specializes in the study of the prosperity gospel, a creed that sees fortune as a blessing from God and misfortune as a mark of God’s disapproval. At thirty-five, everything in her life seems to point toward “blessing.” She is thriving in her job, married to her high school sweetheart, and loves life with her newborn son.

Then she is diagnosed with stage IV colon cancer.

The prospect of her own mortality forces Kate to realize that she has been tacitly subscribing to the prosperity gospel, living with the conviction that she can control the shape of her life with “a surge of determination.” Even as this type of Christianity celebrates the American can-do spirit, it implies that if you “can’t do” and succumb to illness or misfortune, you are a failure. Kate is very sick, and no amount of positive thinking will shrink her tumors. What does it mean to die, she wonders, in a society that insists everything happens for a reason? Kate is stripped of this certainty only to discover that without it, life is hard but beautiful in a way it never has been before.

Frank and funny, dark and wise, Kate Bowler pulls the reader deeply into her life in an account she populates affectionately with a colorful, often hilarious retinue of friends, mega-church preachers, relatives, and doctors. Everything Happens for a Reason tells her story, offering up her irreverent, hard-won observations on dying and the ways it has taught her to live.

With everything that has happened in the last four months, I have tried so hard not to think about dying, and here I sat, reading this book in two days, and thinking about my own mortality so much more than I ever thought I'd be prepared to think about my own mortality.

See, we have all said or thought about the idea that we could be hit by a bus tomorrow, right? For most people, that's as much examination of their own mortality as they have time or inclination to do. The thing is, for the vast majority of people, that bus is abstract. It's the idea of a bus. A shadow of a bus. A vague daydream of a bus.

When we say that we could be hit by a bus tomorrow, we don't actually believe it, and we don't even live on the bus line, and we have a car, and we could call an Uber, and we work from home, and we have no reason to ever leave the house.

Meanwhile, I'm looking at a bus right now. I don't know how far away it is, I don't know how fast it is going, I don't know if it is even able to swerve. For me, the bus is not abstract. It is real, and I am staring it down.

Reading this book forced me to look at the bus. Really look at it. That bus is holding a lot right now.

In the preface, Bowler says,

"One moment I was a regular person with regular problems. And the next, I was someone with cancer. Before my mind could apprehend it, it was there—swelling to take up every space my imagination could touch. A new and unwanted reality. There was a before, and now there was an after" (Bowler xiv-xv; emphasis added).

Before diagnosis day, I would have said that the life that I have with The Husband was ordinary. We do the things that we do, no big deal. But if I look at it from the outside, our life together has been truly extraordinary. We have road-tripped all over the country, had spontaneous adventures, and embraced the unexpected in so many ways.

I have been stuck grieving my before life because there is not enough room for the extraordinary anymore. I can't skydive (I assume the rockstar neurosurgeon wouldn't approve). I don't have the stamina to go for a multiple-hour hike and multi-day camping trip. Frankly, I am far too anxious to try the things I used to enjoy trying for the sheer fact that they scared me. I feel like there is no more room to be Before Melissa anymore.

Before, The Husband took me on a short helicopter ride at the county fair because it was reasonably priced and I am terrified of helicopters and I occasionally enjoy doing things that frighten me. I cried and/or hyperventilated because helicopters are terrifying, and I loved every minute of it.

Before, The Husband took me zip-lining even though I am afraid of heights and in my mind, the zip-line is always thisclose to dropping me to my ungraceful and messy death at the bottom of the forest floor. But I got on that zip-line, and cried as my knees shook. I watched everyone else go in front of me while I stood there and cried, snot bubbles and everything. The guide had to hook up and push me to get me to go, and I cried the whole way. And suddenly, I realized that zip-lining is amazing! It feels like flying. But also, I was crying because I was scared to death, and sometimes, scaring yourself to death makes you feel alive.

Before, I got The Husband skydiving tickets for Christmas one year even though I am afraid of heights, afraid of flying, and afraid of falling. I didn't eat or drink anything the night before because I was worried about puking on the guy who was my tandem guide. The next morning, we got on the plane, and I thought maybe I would pass out. The plane climbed to 13,500 feet, and they opened the door. I had already signed the waiver that basically said skydiving is stupid and you might die and you can't sue us, so it was too late to back out, right? The tandem guide pushed me toward the open door and yelled in my ear that we would go on the count of three: "One! Two!" That sneaky bastard pushed me out the door! I screamed. I blacked out. I cried. The photos show a giant grin on my face. But you better believe that I was terrified. But by the time we landed on the ground, I was ready to go again, so we did! And it was just as scary as the first time!

I have so many before stories.

What after stories will I have to tell?

The Good News, The Bad News, and the Frustrating News

Who is ready to hear the news?

The good news is that there is no new bad news.

The bad news is that there is no new good news.

For now, I need to get into clinical trials, and wait for my follow up in a couple of weeks.

So. Back to waiting.

Still waiting - don't freak out

Okay, so last Friday, I got my post-treatment scan.

This week has been a never-ending hell of waiting, waiting, and waiting some more. Just endlessly waiting.

Tomorrow, I find out something resembling answers, hopefully. Let's talk about this.

On Diagnosis Day, The Husband and I found out a truly overwhelming amount of life-changing information. We spent hours meeting the oncology team, planning appointments, crying, learning about medications and side effects, signing paperwork, crying, learning our way around the cancer institute, and crying some more.

And then.

Radio silence.

We needed time to process everything that was happening and everything that was going to happen. People sent text messages, called, emailed, send FB messages. I ignored all of them for the better part of a week because I was busy crying and being mad at the world and my own body.

Eventually, we emerged from our hole to start telling people the news. From the beginning, it was so hard, and it kept on becoming more difficult with each person we had to tell, which led me to start this blog.

So, I need to remind you that I have boundaries and what that means is that although I have made every effort to be open about this entire terrible process, that does not mean that anyone has the right to my medical information. Tomorrow we find out... something. We will process that information as we do. Once we are ready, that information might be disseminated via the blog, phone calls, FB, or not at all. Right now, we just don't know.

I know that waiting to hear from us is hard, but just try to imagine how hard it has been for us!

The little things add up to the ugly side.

I thought that finishing chemo and radiation meant that the hard part was over.

I was wrong.

Since finishing, I've had more time on my hands than I care to think about. Being idle is bad, but being unmotivated is worse. The fatigue hit me pretty hard, too, so all in all it has been a rough couple of weeks.

I'm not technically allowed to drink on the medication that I am on. I wish I could.

Nobody ever said that cancer was supposed to be fun, but this waiting period, where I don't know what exactly I'm waiting for, is especially unbearable. I don't even know what phase 2 of treatment looks like. I might find out next week. Or I might not.

My head itches. The last week of radiation left visible burns on my head. While I would hardly argue that I'm the queen of vanity, I will say that catching people staring at my head makes me feel weird in a way I never expected. The skin started peeling off of the burn, so that is a little extra itchy and unpleasant.

Small things are leading to panic attacks that I thought I had under control. I was wrong.

The body is a fickle thing. I am out of shape and still in recovery from some pretty traumatic stuff, right? Yet walking outside in the heat leads to me getting shortness of breath, which then scares me, which leads to panic attacks.

I'm thirsty like I've never had water before in my life. I still mostly just want things that are cold. But I also get cold easily, so all I want is to be cocooned in a blanket all day with a super ice-cold drink by my side.

I don't want to leave my house.

My hair is still falling out.

I'm in a constant bad mood.

The Husband is doing the best he can with me, but I will be the first to admit that I've not been an easy patient lately. I just don't want to do anything, decide anything, think anything. And I'm tired of listening to myself complain.

I didn't expect this part to be so hard.