Cancerversary: 3 months since Diagnosis Day

So. three months ago today was Diagnosis Day. I found out that I have glioblastoma, an incurable brain cancer.

In the last three months, I've had surgery to clean an infection, been hospitalized twice, completed six weeks of chemo and radiation, dealt with some truly terrible nausea, discovered allergies to two different antibiotics, and found out enough of the pathology of my particular tumor to know that things will be difficult in the future.

In the last three months, The Husband has taken me to the beach thanks to a generous donation from his very kind coworkers, taken me to the mountains thanks to a discount from Hotels.com that we did not expect, even though I slept the whole time we were there, bought me any food that I might tolerate, taken me to a comedy show, and been my rock, my angel, my foundation through all of this hell. Seriously. I love that guy.

In the last three months, I've lost hair, I've lost weight, and I've lost patience with myself and with others. I don't think I've lost my temper, but I've come close.

In the last three months, I have cried like my soul was being ripped out of me one strand at a time. I have laughed so hard it made my surgery scar hurt. I have ranted and raved, vented, and yelled. I've had meltdowns, breakdowns, hysterics, panic attacks, and everything in between.

In the last three months, I've thought long and hard about who I am. About what makes me me. I've thought about what it means to be a friend, a sister, a daughter, a wife. I've thought about relationships that surprise you and relationships that plug along exactly as expected. I've thought about expectations of myself, of The Husband, of those people I choose to allow around me. I've thought about the value in keeping some and the value of letting some go. I've thought deeply about the value in putting up some boundaries.

In the last three months, I've rekindled relationships with a surprising number of people. As a pessimist by nature, I've never really had high expectations, but what I've found is that people will surprise you every time.

I've thought about my limits, physical, mental, emotional, spiritual. I've reached those limits. I've disappointed myself. I've made myself proud. Sometimes on the same day.

In the last three months, I've discovered that stubbornness and spite will take you a long way, but it won't always take you the whole way.

In the last three months, I've fought to be more than this diagnosis.

In the last three months, I've experienced loneliness and overwhelming support. I've struggled to keep my spirits up, and I've done pretty well, all things considered.

In the last three months, I've sworn at almost every single healthcare provider I've seen (I don't like needles, and no, it's not the same as getting a tattoo).

In the last three months, I've realized that no matter how hard I try to be more than my diagnosis, this thing in my brain will always be there. It doesn't make me who I am, but it is a fundamental part of who I will be. Cancer changes you.

In the last three months, I've learned the hard way that cancer changes everything.

The Good News and Bad News about my tumor

Now more than ever, I need my family and friends to avoid Dr. Google. Remember, I am only taking medical advice from my oncology team, okay?

I'll start at the bad news: The Mayo Clinic found that I do NOT have the gene mutations that make this type of cancer easier to fight. The first one is the IDH1 mutation, which means that the tumor started as something else, and then became glioblastoma. In my case, it's been the g-word all along, so this will be much harder to fight. The other gene is an MGMT silencing mutation. The fact that I do not have that means that I metabolize the chemo too quickly, meaning the chemo is less effective on me than on the people with this mutation. This means that my fight is going to be significantly harder.

The good(ish) news: About 2 weeks ago, they had to do a mid-treatment MRI (which they don't usually do) because I had developed a mild hand tremor in my right hand (unexpected because surgery was on right hemisphere). They wanted to rule out seizure activity and more importantly that the tumor had not crossed from the right hemisphere to the left (unusual but also unusually BAD). So, the MRI ruled out both (good news) but also showed that where the tumor lesion was 12mm at the beginning of treatment, it was now at 6mm, so radiation was objectively making the tumor lesion smaller. Good news, right?

What they let slip (and I did not know beforehand) is that radiation is typically only effective on this type of tumor 20% of the time. Lucky me, I'm part of that 20% where radiation works, since all the genetic news came back not great.

But if I'm being really honest, I'm not really sure I would have gone through the radiation HELL if I had known there was only a 20% chance of it working. Radiation SUUUUUUUUUUUUUUUCKS, and 1 in 5 chance of success is not great. Now, it has been successful so far (next scan in two weeks) but I feel weird about all of it, because if I had known some of these numbers, I might have made different choices that would have ended up with me in a worse position.

So, now more than ever, I need your help:

GoFundMe 
If you can't donate, please share this across any social media platforms. More than ever, this needs to go viral. Thank you so much for your help and support!

My CashApp: I hate to even ask, but if you are willing and able to donate any amount at all, it would help me pay for gas, groceries, and other necessities, especially while I am not working. Keep in mind, GoFundMe takes a percentage of the donations in processing fees, while CashApp will give me 100% of whatever is donated.

A good friend of mine has started a FB fundraiser. If you prefer to donate there, any help would make a difference. Maybe we can make it go viral?

If you are in Connecticut, there will be a benefit event very kindly being held on my behalf at Sudor Taino Gym on October 24th. Any donations there will also be very helpful!

Unexpected side effects of ending chemo and radiation

It has been five days since I finished chemo and radiation. Some unexpected and not quite pleasant side effects of finishing this poison:

• I slept 20 out of 24 hours for the first three days, and only slightly less than that in subsequent days.
• My appetite is basically non-existent. I eat because I have to, but mostly, I'm forcing myself to eat and being mad about it. Food sucks.
• I am thirsty like I've never had water before in my life. Yesterday I drank easily four or five liters of water or juice, and my thirst is never quenched. The Husband says my body is trying to flush out those poisons I've been ingesting for the past 6 weeks. 
• Also, I only want things that are cold. Tons of ice in my drink, cold foods, smoothies, etc. If you know me, you know that it's weird that I want ice because I almost never want that much ice. Lately, it's been so bad that I've been eating ice. Rather, letting it melt in my mouth. 
• I am cranky in a way that I didn't expect after finishing treatment. I thought I would be happy. I thought I would feel accomplished. I thought I would feel some kind of something good. Instead, I feel annoyed because this f*cking diagnosis is hanging over my head while I wait to find out if the treatment worked. The thing is, I still have two and a half weeks of waiting, and I don't feel good about that right now.
• My hair is continuing to fall out on both sides of my head. Not that I'm looking for a wig to fix this mess, but those little hairs are itchy!
• The last week of radiation was the "power-up" period, where they focused the beam (?) more tightly on one spot on my head. What that means is that I have visible burning on the skin on that side of my head, to the point that it caused blisters. The healing process is itchy, and my headskin looks weird.
• I probably mentioned this before, but I am so tired. There is nothing that I want to do or see or eat. I basically just want to sleep forever. I know that is not necessarily the best, but for now, that's where I'm at.

And just like that, my energy is gone. Time for yet another nap?

Day 30 of 30: The Bell and The Prophet

Today is the day. My final day of chemo and radiation.

These past 85 days from diagnosis of cancer to completing the first phase of treatment, have been a little (a lot) like hell. The pain, the fatigue, the nausea, and the other side effects I've not spoken much about before have been so difficult to get through.

"When your last treatment has come and gone, ring this bell to tell everyone! It's a time to celebrate, hip hip hurray! What a great feeling, what a great day!"

This is the bell at the cancer institute. Because I teach English, I have to mention the comma splice, and I'll leave it at that.

More importantly, because so many of the decisions I have made in my life have been based on avoiding attention as much as possible, I know that I am resisting ringing this bell. Ringing this bell is a celebratory performance, and while I am proud of myself for going through this very difficult thing, I don't think this is the time to celebrate. Not yet.

I don't want anyone to think that I'm giving up. I'm not. As a dear friend said to me yesterday, what I am doing is squaring my shoulders and bracing myself for the next round of this fight. This fight has been hard, and the last thing I want to do is get sucker-punched because I wasn't paying attention.

So, be proud of me for finishing this round of this treatment. I am proud to have the strength and support of so many of my friends and family.

I started re-reading The Prophet recently, as I do every year or two. 

The Prophet by Kahlil Gibran

This book has brought me solace over the years. It is prose poetry, beautifully-written, that speaks to my soul. It is lovely, and it is mournful, and it reminds me to be more intentional, and every so often, something comes out and hits me over the head in an unexpected way:

"You have been told that, even like a chain,
you are as weak as your weakest link.
This is but half the truth. You are also as strong as your strongest link.
To measure you by your smallest deed is to reckon the power of ocean by the frailty of its foam.
To judge you by your failures is to cast blame upon the seasons for their inconstancy" (Gibran 86).

I've had so many people telling me that I am so strong going through all of this. That they don't know if they would be able to go through what I am going through. The thing is, I don't feel strong. It is not strength, but rather sheer force of will, stubbornness and spite, and just a touch of rage that has gotten me through this. A wise person once told me that you cannot pour from an empty cup, and there have been so many times that my cup has been so close to empty. I have succeeded in completing this step, no matter how close I've been to empty, and it is no small deed. Like the ocean, I will keep on keeping on, and like the seasons, I will be inconstant, but such is the measure of me.

I am strong, and I am weak.

"[T]here are those who have the truth within them, but they tell it not in words" (Gibran 60).

I will not ring the bell.

Don't Read with Me: The Eternal Ones by Kirsten Miller

So, I found a book in my bookcase that looked interesting called The Eternal Ones.

The Amazon blurb says:

Haven Moore can't control her visions of a past with a boy called Ethan and a life in New York that ended in fiery tragedy. In our present, she designs beautiful dresses for her classmates with her best friend Beau. Dressmaking keeps her sane, since she lives with her widowed and heartbroken mother in her tyrannical grandmother's house in Snope City, a tiny town in Tennessee. Then an impossible group of coincidences conspire to force her to flee to New York, to discover who she is, and who she was.
In New York, Haven meets Iain Morrow and is swept into an epic love affair that feels both deeply fated and terribly dangerous. Iain is suspected of murdering a rock star and Haven wonders, could he have murdered her in a past life? She visits the Ouroboros Society and discovers a murky world of reincarnation that stretches across millennia. Haven must discover the secrets hidden in her past lives, and loves, before all is lost and the cycle begins again.

In the very first sentence, we hear about New York. Four sentences into the blurb, we find out she has to flee to New York.

I am 97 pages into this book.

Guess where we are not.

The first 97 pages are full of cliches and stereotypes:

• The gay best friend in a small country town who helps the protagonist make prom dresses. 
• The God-fearing grandmother who believes the protagonist is possessed by a demon.
• The semi-creepy clergy-man who seems just a hair over the line with his familiarity with the protagonist (a 17-year-old girl).
• The protagonist describes herself as ugly, when the description is of an objectively pretty girl. 

97 pages in, and I still haven't reached the hook. I gave it 97 pages, and it very clearly feels like it is still in the introduction part. There's no hook yet. I do not have time to read 97 pages with no hook.

I have always said that Life is Too Short for Bad Books. The thing is, Life ALWAYS was Too Short for Bad Books, but now it is REALLY Too Short for Bad Books.

So.

I'm not finishing this book. If it sounds interesting to anyone (especially local), let me know and I'll give it to you. If no one wants it and you are not local, I'll mail it to you.

What book should I try next?

The problem of the bell

Today starts week 6 of radiation and chemo.

I feel so weird about this. I should be happy to completing this stage, right? But I'm not?

I feel weird. I feel tired. I don't necessarily feel happy. I don't necessarily feel sad. I just feel... unresolved.

So at the end of this week I get to ring the bell to signify the end of radiation. This is supposed to be a joyous moment to celebrate the end of this stage. Meanwhile, here I am trying and failing to work up any joy because even though I will be finished with radiation, I will never be cancer-free. The treatment, of some kind or another, will be with me for the rest of my life. So how to I feel happy about finishing something when it's only one of several phases I will be going through for the rest of my life?

This treatment regime that I'm going through is only phase 1. We don't yet know what phase 2 will look like, but right now, it is very likely going to involve trying to get into a clinical trial. My GoFundMe has not made nearly enough money to fund these potential clinical trials, especially if they involve any amount of travel or require relocation. How do I ring a bell when I don't even know if I can afford stage 2 of treatment?

I know, I know, I should keep my hopes up and continue with the positive vibes, but do you know how hard that can be when your cancer is incurable?

The Husband says that the ringing of the bell is as much for the radiation therapists and staff at the cancer institute as it is for the patients. I can see that, because those are some truly wonderful, kind, and compassionate people who take care of me and hundreds (thousands?) of others.  The Husband says that the staff at the cancer institute need something to celebrate.

But I can't help but feel like it's a false celebration at a party I don't even want to go to.

So what do I do? Do I ring the bell even though I don't really know that I want to? Do I ring the bell for the therapists and caregivers? Do I ring the bell for The Husband? Do I ring it for me as an intermediary celebration before moving on to the next phase?

What do I do?

The Problem of Food

This evening, I went into full meltdown mode.

The trigger:

Food.

This oral chemo that I'm taking is supposed to be very tolerable, but it still makes me feel like I've got gremlins running around my stomach and I feel thisclose to barfing pretty much every day.

Today, the nausea was exceptionally gross, so the only thing I wanted was something extremely cold, so I had a smoothie.

This evening, The Husband, being such a good husband, asked me if there was anything in particular that I wanted to eat for dinner, and honestly, all I wanted to do was barf.

I didn't barf, but I did lay down in the bed and cry for a little while. There is so much nausea in my life, and my favorite to do before all of this was eat interesting, spicy, fatty, delicious food.

Chicken tikka masala

Plaintains in any form

Macarons (especially strawberry, raspberry, or pistachio)

Anything guava-flavored

Chinese food

Now,  very few foods are interesting or delicious, no matter how spicy or fatty they might be. I eat because I have to eat, but I rarely enjoy eating anymore, and that is just sad. Now, food is just another reminder that I am sick, and I almost never want to think about food anymore.

My new favorite foods are Slurpees or smoothies. Things that are ice cold.

Slurpee

So, the moral of the story is that the unexpected emotional breakdown of the day would be because food sucks and I basically don't like any of it anymore. If I'm being honest (and I am!) this is just another ugly side of this stupid diagnosis. I hate this part.

Now I have to go eat so I can take my night medications.

So many meds...

Did you read with me? The Power by Naomi Alderman

Did you Read with Me?

The Power

Because this is not like a traditional book club, I am posting this follow up because I finally finished the book. If you have not finished be aware, spoilers may be found in the rest of the post and in the comments. Continue if you dare!

Spoilers!

Before we start with any of the discussion questions that I had linked to before, I wanted to talk about a couple of things that stood out to me.

Remember, Amazon's blurb says

"In THE POWER, the world is a recognizable place: there's a rich Nigerian boy who lounges around the family pool; a foster kid whose religious parents hide their true nature; an ambitious American politician; a tough London girl from a tricky family. But then a vital new force takes root and flourishes, causing their lives to converge with devastating effect. Teenage girls now have immense physical power--they can cause agonizing pain and even death. And, with this small twist of nature, the world drastically resets."

I expected this book to play with gender roles in unexpected ways. I did not expect this book to completely avoid the idea of sex vs. gender in the way that it did. There was one male character who had the power (in one of Margot's chapters, because it was a boy that Jos knew) but the book made it clear the reason the boy had the power was because of a chromosomal abnormality. I expected Jos's troubles to turn out to be because she was trans, but unless I missed something, from what I can tell, the power was entirely determined by sex, not by gender. So she was just defective.

I was disappointed that there was this missed opportunity to examine how the power would affect those who are trans, those who are intersex, those who may have transitioned, and how the new society would affect, accept, or reject those who did not fit these norms. Besides the one boy (can anyone remind me of what chapter he appeared in??) the only examination of gender roles besides the obvious was with Jos and her trouble controlling her power. Her lack of control was presented as a defect, and I was not comfortable with the idea of her lack of control being viewed as failing to present her femininity in the expected and most appropriate way. In this book, are woman with the power expected to remain consistently in control? As a logical counter-example, are men in the real world (not the book) expected to remain consistently in control?

A couple of things that stood out to me before I address some of those discussion questions:

At one point, Tunde writes in his notes that

"At first we did not speak our hurt because it was not manly. Now we do not speak it because we are afraid and ashamed and alone without hope, each of us alone. It is hard to know when the first became the second" (Alderman 269). 

This really jumped out at me, not because of the evaluation of masculinity, but rather because of the universality of trauma. It is so easy to feel alone in whatever trauma you have experienced, and that feeling of aloneness leads to a stigma, a feeling of shame because how are we strong and independent people supposed to admit weakness as a result of our traumas? We all have traumas, right?

I have at least two separate moments in my life that definitively caused PTSD. I talk about those moments with close friends and family. I talk about those moments even more with my therapist. How many people talk about those moments at all? How many people suffer alone in their hurt?

Roxy and Tunde eventually end up together, and the next thing that really jumped out at me was:

"Their bodies have been rewritten by suffering" (Alderman 324).

This really speaks to me about identity. Suffering changes us fundamentally, mentally, emotionally, spiritually, even physically. Depending upon the kind of suffering we are talking about, there is a visceral change from deep within, and learning who you now are can be quite the journey. Of course, because of my diagnosis, there are certain things I pick up on. I have changed fundamentally because of this diagnosis. But the idea that the change is a rewriting of myself speaks to me as an English Instructor. Those of us who teach composition spend so much time talking about re-writing, the difference between revision versus proofreading, the importance of understanding that writing is a process.

Reading this, I suddenly had this feeling. Suffering changes us, but it had never before occurred to me that suffering could make us better. The other day, I was speaking with my therapist (remember, therapy is good, y'all!) and she said something that really changed my perspective. She told me that an oncologist had asked her why she decided she wanted to specialize in oncology counseling as opposed to all the other kinds that are out there. She told me that she thought about it, and told the doctor that she found that her patients discovered their best selves as they worked through treatments, pills, radiation, therapy, and everything else. She said that in other specialties, she rarely saw so much change so significantly in her other clients as in her oncology clients.

I think that my body has been rewritten by suffering. The beautiful part of that is that I get to rediscover who I am going to become.

So, in the meantime, let's talk discussion questions:

1. The premise of The Power seems to be that if a new world order were created—with women in charge—it would look little different from the way it does now. That woman would use their power to oppress men. Do you agree with that premise? Does Naomi Alderman make her case convincingly? Do you see other possibilities?

2. Follow-up to Question 1: The book poses a question: why do people abuse power? What does the book suggest the answer is? What is your answer?

3. As an interesting exercise, go through the novel to identify those societal structures, both legitimate and criminal, that have been changed by feminine power. Look at how the book treats religion, the military, sex trafficking and porn, harassment, even bullying. What does the new power inversion say about the way gender and sexuality operates in "normal" society (i.e., today in the early 21st century)?

4. In what ways does each of the four characters—Eve, Roxy, Tunde, and Margot—illuminate the events of the novel and all that has changed? Whose perspective or story do you find most interesting … or revealing … or engaging?

5. What do you make of Neil Adam Armon and his gushing letter to Naomi Alderman, "I am so grateful you could spare the time," and "Sorry, I'll shut up now"? If you are a woman, does that tone, do those words, have a familiar ring? Also, what's the joke here about appropriation, given that Alderman's name, not Neil's, ends up on the novel? (If you haven't already, play around with the letters of Neil's name.)

6. Vogue reviewer, Bridget Read (really), calls parts of the book "revenge porn." Do you agree with her label? Do you find the revenge satisfying or twisted … or both?

7. Neil ponders: "Gender is a shell game. What is a man? Whatever a woman isn't. What is a woman? Whatever a man is not. Tap on it and it's hollow. Look under the shells: It's not there." What does Neil mean, and do you agree or disagree? How do you see gender? Is it "real" or a social construct?

I will answer some (but not all) of the questions in the comments below.

Remember, spoilers abound!

Still not a Cancer Cut

So guess what.

I cut my hair again!

I'm so cool, my air buds have wires!

Now, don't get too sad. This is not a cancer haircut, this is a shorter cooler haircut! Wanna know why I cut my hair shorter?

Look at this mess:

Call me Patches McGee!

The radiation oncologist told me that my hair would fall out in patches from the radiation. He wasn't kidding. Check this out:

This side is getting radiation. You can see my brainhole!

All the hair fell out on this side. The incision and brainhole are both pretty visible.

The other side was pretty patchy, and it all went gray because apparently brain surgery ages you? But I realized I could do a cool trick. I looked at The Husband and said, "Guess what I can do." He looked over at me (he should have known better) and I grabbed a clump of hair on the non-radiation side and it came out in a clump.

I thought it was funny!

He was less amused.

To be very clear: This is still NOT a cancer cut. This is because I was literally pulling my hair out because I thought it was amusing, and the only way to get me to quit was to shave it short enough that I can't grab on.

The first time my hair started falling out, I had some feelings that I didn't expect. This time, I also had feelings that I didn't expect, but they were different. It didn't feel like a reminder of my diagnosis. It felt like a bad joke, a prank played on me by radiation that was only supposed to affect "patchy" sides of my head, but then the patches got bigger, and the clumps just kept coming out (with my help, admittedly). But for some reason, I felt like it was funny. I laughed at the absurdity of my stupid hair, with which I've had a hate/hate relationship for as long as I can remember, and now my hair is all like:

Okay, I'm out.

I mean, this is so silly. So, please, do not feel sad for me. Don't feel pity for me. Honestly, this haircut is just as cool as the previous one, plus, it gives me an excuse to wear hats that some of you have so kindly sent me!

Hats are cool!

Week 4: I'm Tired - Like, REALLY Tired

This is the point in time in the treatment cycle where the fatigue is normal, the nausea is normal, and the hair falling out is normal. All of the unpleasant things that I feel are all normal.

Normal sucks right now.

I spent the holiday weekend sleeping. Really. All of it.

And I'm still tired.

This week I have approximately a million appointments, and frankly, I don't wanna.

Don't get me wrong, I'm gonna. But that doesn't mean I have to like it.

I know, I know, I'm supposed to stay positive in the face of adversity. I should keep a good outlook because strong mental health and a positive outlook are proven to lead to better outcomes. My logical brain says that I need to fix my attitude and get with the program. My logical brain says that I'm more than halfway done with the treatment plan, and the plan is going exceedingly well. My logical brain says that this feeling of nausea and fatigue can't last forever.

And then, there is my emotional brain.

My emotional brain tells me all the things that I don't want to hear, that I don't want to tell anyone, that I don't want to admit.

My logical brain knows that the stigma against mental illness is societal and widespread, and that all of these feelings that I don't want to talk about are normal.

In an effort to overcome and ignore that stigma, I'll tell you that two of my approximately a million appointments this week are for therapy. If nothing else, it is important for my friends, my family, and everyone else to know that cancer does not just take a physical toll, but also a mental and emotional one.

And ultimately, whether you have cancer, know someone who has or had cancer, or are just one of my readers, I want to say that, in all likelihood, we all need some kind of therapy. There is no shame in needing or wanting to talk to someone. We don't feel shame about having a cold or catching the flu. Why should anyone feel shame for feeling their feelings?

Well.

This post went in a different direction than I expected. Maybe that's because I'm still tired.

But while we are here, just think about it. Cancer is hard. Life is hard. If it is too hard, there are people who can help. There is no shame in that game.