Original poem, and a commentary on quarantine

discarded mask

disgusted by the disposable nature of safety

one year ago I would not have needed the muzzle

keeping me in

keeping you out

stifled by hot breath

disgusted by myself

why is it I have to burp every time I put on the mask?

disappointed in protesters who disrespect my condition for their "constitutional rights"

Freedom to kill me

dissolves my Freedom to be

I long for before

1 impatiently wait for after

unable to mask my disgust at the unmasked-

so afraid of every cough, every sneeze.

- 21 May 2020

I wrote this for my writing group a few weeks ago, and I want to talk about this coronapocalypse. Now, I know that people are stir crazy, fighting cabin fever, and trying to figure out how not to dropkick their kids out the window.

The thing is I've been essentially on lock-down, self-quarantining since flu season started. I go out every once in a while with The Husband, with my reusable washable mask, and tons of hand sanitizer. Our trips out are quick and purpose-driven, and involve very little in the way of meandering. Since I've been essentially in isolation since December (I think?), I've become very uncomfortable being in public. People cough, sneeze, and breathe on all kinds of things that I don't even want to think about. So essentially I stay in my house.

On top of all of that, I just recently started anOTHER new chemo protocol. Plus my wonderful oncology team has so kindly added even more pills to take every day.

I've got uppers, downers, anti-inflammatory pills, antacids, the whole lot. This new treatment protocol is HARD. Not to get into too much whiny detail, but sometimes it feels like drowning under the weight of it all. I've been trying to keep up with people as much as I have the time and energy to do so, but y'all, I am tired. There is nothing interesting happening, and because I am even more immunocompromised than before, I really just don't trust going out in the public. If one flu virus or strep germ gets to me, it could be incredibly dangerous.

So, that being said, I know that I've been pretty radio silent for a while. I know there is a whole apocalypse happening out there in the world. My silence doesn't mean I don't notice what is happening out there. My silence means that I have my actual literal brain as my top priority right now. That is all I can focus on at the moment, and you know what, I have actual literal brain cancer. I think this focus is fair.

Books: The Book of Lost Things by John Connolly (The Gift of Ignorance)

While David is in this land that is not quite like our own, he is stalked by the villain of the story, the Crooked Man. At this point, he has discovered the Crooked Man's lair, with a thousand rooms and for each room, a story. Many of these rooms have stories that are almost, but not quite, familiar. A girl with a red hood. A gingerbread house. A witch.

In one of those rooms,

"a woman sat facing a blank wall, endlessly combing her long, silver hair. Sometimes, the Crooked Man would take those who had angered him to visit the woman, and when she turned to look at them, the would see themselves reflected in her eyes, for her eyes were made of mirrored glass. And in those eyes they would be allowed to witness the moment of their deaths, so that they would know exactly when and how they would die. You might think that such knowledge would not be so terrible, and you would be wrong.

We are not meant to know the time or the nature of our deaths (for all of us secretly hope that we may be immortal). Those who were given that knowledge found that they could not sleep or eat or enjoy any of the pleasures life had to offer them, so tormented were they by what they had seen. Their lives became a kind of living death, devoid of joy, and all that was left to them was fear and sadness, so that when at last the end came they were almost grateful for it" (Connolly 295).

I have mentioned many times before that I have my oncology team with all of their fancy degrees. These are very smart people. These are the only people allowed to provide me with medical advice. No Dr. Google, right? This passage also explains exactly why I choose (at least for now) intentional ignorance. For all I know, I have 10 days, 10 weeks, 10 years in front of me. As a direct result of my intentional ignorance, I have been able to not only enjoy beautiful things, but also forget, even for a few moments here and there, that I have cancer. There was Sunflower Day. The day that I didn't ring that bell. I got to Van Gogh to the Museum. I went to a hockey game.

The Husband has given me the gift of maintaining intentional ignorance, and it truly is a difficult gift to give. He carries the weight of knowledge on his shoulders and in his soul, and I know that weight is a difficult one to bear.

Because he has given me this incredible gift, I have had so many moments of pure joy. We have so many moments that I don't usually share, because to me, they are sacred.

I still don't have an official prognosis. Perhaps at the next scan there will be more news. But right now, because The Husband has given me the gift of intentional ignorance, I am able to experience true joy. The life I get to experience now is so fundamentally different from the Before. I try not to grieve too much for the Before life. Life now is different, but certain things have not changed. The Husband is still as big a dork as before (I can say that because I, in fact, am also a big dork). We still laugh together. I am grateful that I can still laugh, even in the face of all of this ugliness, but that is only possible because I have The Husband, the greatest gift of all.

Have I mentioned that I love this guy?

Intentional ignorance

Throughout my journey through this diagnosis, I have taken certain steps to set boundaries to protect my own mental, physical, and spiritual health. I have been adamant about avoiding Dr. Google. I have been very strict with my friends and family about not looking for comfort from me if they feel bad about my diagnosis. I've worked really hard to maintain a level of comfort for myself where I can.

When I shared the news of my diagnosis, I chose my words carefully because I did not want to be misunderstood as I explained what was happening to me.

Through all of this, it has been incredibly important for me to avoid certain pieces of information.

Picture this:

Interior: Doctor's office. Patient and caregiver, and doctor.

Doctor: You have cancer.

Patient: How much time do I have?

Doctor: Six months. Maybe. It depends.

Patient: Spends the next six months with an expiration date hovering over her head.

This is not what happened to me. Instead, it went kind of like this:

Interior: Doctor's office. Patient and caregiver, and doctor.

Doctor: You have cancer.

Patient: *Stunned silence*

Doctor: Now, I don't want you looking up information about your diagnosis, because yours is a very unusual case. Any data you find on google will be outdated, and wouldn't apply to you anyway because of your age, the symptoms with which you presented, and your general level of healthfulness. You are going to want to look this up, but I strongly recommend that you don't, because it will not help you.

Patient: Ok.

And I have not googled this condition, not even once. I'll be perfectly honest, there are many times that I was tempted to look it up, just for a minute, just for a tidbit of information.

Here's where The Husband swoops in to be my hero, as usual.

It is hard to be intentionally ignorant of my diagnosis and my potential prognosis. From the beginning, I have tried to be open about mental health, and as my sister has told me multiple times, outcomes in the treatment of any cancer are so dependent on mental health, and it is incredibly important to stay as positive as possible, even when all I want to do is crawl under my bed and cry for a few days.

The Husband has taken one for the team. He's my research guy. He has looked up the things that need to be looked up, and he has been kind and careful enough to not tell me about any of it. I understand that there is some truly frightening information out there. I have none of that information.

Some may feel that it is wrong for The Husband to keep this information a secret, but the simple fact is that I know myself well enough to know that if he gave me some of the information that he has, my mental health would suffer tremendously. I am on anti-depressants. I asked for them about 30 seconds after I got my diagnosis. If I remember correctly, my exact words were, "Yeah... I'm gonna need some Prozac."

Let's go ahead and address the stigma surrounding mental health.

We don't talk about how we take our "happy pills" to function. We don't talk about going to therapy. We don't tell people when we are feeling depressed, hopeless, suicidal.

I have been depressed several times in my life. I have been in and out of therapy for years. I am on those "happy pills" as we speak.

Working through mental health issues is as normal as going to physical therapy for whiplash.

The Husband has been my rock. My angel. My everything. And the simple fact is that my mental health would not be where it is right now if he had not taken the role of research guy. He has protected me from so much that is out there. He has been so understanding of my need for intentional ignorance, and he has built that protective wall around me to keep me safe.

We are realistic. At some point, I'm going to need to end this phase of intentional ignorance. But in the meantime, I am taking care of my mental health the best way I know how, and The Husband is playing the critical role of enforcing that intentional ignorance, exactly as I asked him to all those months ago.

I know that this arrangement would not work for everyone, but for now, it is working for me.

Cancer Update: Scan results and Boundaries

Well, today we are taking a break from When Things Fall Apart, but don't worry, there are still a few posts ready to finish analyzing this book.

In the meantime, here's an update.

I had my brains scanned a week or so ago, right? I got the results just a couple of days later, but I needed some time to process the information before I put it out there. As a reminder, I am very open about the horrors of this diagnosis most of the time, but that does not mean that I am obligated to share with you every medical detail of my life.

Anyway, there is good news: There no significant change to the size of my teeny-tiny tumor, so my doctor wants to stick with the current plan and re-check my brains in a few months. Right now, they are not worried about me, and from what I can tell, the lack of urgency on their part means that there is nothing to worry about doing.

I am doing maintenance chemo, and I am going to continue that for at least the next six months, I think, unless something significant changes in the scans of my brains. That part, I am not looking forward to. Chemo SUCKS,  and even though they say that oral chemo is supposed to be more easily tolerated than IV chemo, it still SUCKS.

For a little while, I was feeling really good, and now, I'm not. It happens. Nothing out of the ordinary for a patient with my diagnosis to feel good, then feel bad, then feel good again, and so forth and so on and what have you. It's a cycle.

Remember that bus that could hit me tomorrow? I feel like it just revved its engine to remind me that it's there, but luckily, for now, it's not going anywhere.

I am still frustrated by many parts of my diagnosis. I feel like there is so much waiting involved, and I am not a naturally patient person. Right now, I am at the point in the cycle where I am cranky, and tired, and generally grumpy. I know that I will feel better, because it is a cycle of ups and downs, but right now, I just want off this ride.

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?