Self care: not just about bubble baths and mani/pedis

It seems that many people equate self-care with treating or spoiling yourself. Buy yourself something pretty. Spend two hours in a hot (lukewarm) bubble bath. Paint your toenails.

Listen, I'm all about treating yourself, but just like I have a thing about being unashamed about mental health stuff, I have a thing about self-care not always being fun. The other day, for me, self-care looked like a too-short nap that left me cranky, taking medicines that I didn't want to take even though I knew it was for my own good, and going to physical therapy even though I didn't particularly feel like it. For me, sometimes self-care means venting because I feel whiny (luckily The Husband doesn't just leave me on the side of the road lol).

Self-care doesn't have to mean look on the bright side and ignore the bad stuff. Sometimes self-care means today sucks, let's try again tomorrow for something better. We can try to be positive all we want, but when things go sideways, we can't just pretend like it didn't happen. We have to be allowed to acknowledge the stuff that is no good. That doesn't make us bad. Sometimes self-care means you understand that timing matters. Now is not the time to have this conversation. Tomorrow I might be in a better emotional headspace to talk about that conversation. If I am not ready for it, I'm not. That has to be okay, right?

Today, self-care meant eating breakfast, writing some mail, and taking a walk because I was sore from physical therapy yesterday. It also means that I need to hydrate because that short walk made me sweaty.

Okay, take your Prozac, get some therapy, be kind to yourselves. Give yourselves grace, and be more forgiving of each other, but remember, nobody is going to look after your mental health for you. Take care of yourself. That's self-care.

That's all I got for now.

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.

11 month cancerversary

Well, here we are again. Another month of surviving cancer. Getting ever closer to the big one.

So, I still have cancer (duh). I get a lot of people sending prayers for miracles, positive vibes, so much hope that this incurable cancer will just fix itself. I really appreciate all of the positivity, but it is important to remember that positivity can become toxic, such that the patient is essentially blamed for not being positive enough, at which point, it becomes her fault that she is still without that miracle.

To be clear, I am not saying that I reject positivity, only that I take it with a realistic view of the science, and the primary treatment planning led by one of the best medical oncologists in the region. No Dr. Google. Please do not recommend drugs (legal or otherwise) or CBD oil. I will take the many drugs recommended by my oncological team. I will not try the MJ, because I just don't like it. If my primary oncologist prescribes MJ for me, I'll take it. Doesn't mean I have to like it.

Anyway. after all this time, and all of these surgeries and adjusted treatment plans, I really appreciate all of the support, kindness and love that all of you keep pushing in my direction. For that, you truly are awesome friends and family.

Fave Quote of the Book: Small Victories by Anne Lamott (Part 2)

From Amazon:

So, where did we leave off? (LINK)

Was I saying that I came from an unhappy family?

What does it mean to have a happy family?

Who knew that I'd be exploring such difficult questions in a silly little blog that is supposed to be about non-cancer. Yet, here we are.

My family is special. I remember a childhood of laughter, silliness, bad jokes, talking lobsters, and spontaneous trips to unexpected locales.

I also remember a childhood with tears, fear, hurt and misunderstanding, and being misunderstood. As a shy introvert from an exceptionally loud family of extroverts, I spent too much time with my own thoughts, wishing I fit in better. I had feelings I didn't understand, couldn't put words to, and as an early reader who read "at the college level" by the time I was 11, it was unusual to be unable to find the words I needed.

We fought (and still fight). We cried (and still cry). We try to understand each other, even though it often feels like we all came from different planets. Are all families like that? I honestly don't know.

We had love, but we also had an unfair share of unhappiness. Well, I call it unfair, but I don't know if that is true either.

We have hard conversations, hard feelings, and hard hearts, and all the wishing in the world can't undo some of the terrible things we've done, or unsay the terrible things we've said. Lamott says,

"Forgiving people doesn’t necessarily mean you want to meet them for lunch. It means you try to undo the Velcro hook. Lewis Smedes said it best: “To forgive is to set a prisoner free and discover that the prisoner was you.” (Lamott 117).

As family, we should always be prepared to forgive, because we are family, right? Even the Bible says we should turn the other cheek, so forgiveness is the word of the day, yes?

Maybe.

For me, explicit forgiveness is not free. Again we come back to the idea of grace. I am not full of grace, I might be full of something, but grace ain't it. Forgiveness comes at the cost of acknowledging the wrong, committing to never repeat it, and apologizing. An apology involves the words "I am sorry" or "I apologize for the hurt I caused to you."

A non-pology might include the words "I'm sorry if..." or "I'm sorry but..."

"I'm sorry if I hurt your feelings" is NOT an apology. "I'm sorry but I didn't mean it that way" is NOT an apology. I'm sorry for anything that I might have done" is not an apology. It is so difficult to find grace when trust is broken. Trust might be healed if the apology includes a commitment to not repeat the transgression. Trust might be healed if the transgressor takes some action toward healing. Trust might be healed by respecting boundaries.

I am no expert on grace, but I have so many expectations. I love the idea of grace, of love undeserved and without conditions. I want to learn that grace.

My therapist tried to teach me about giving myself grace. Do you want to know what is even harder? Giving grace to others. But as Smedes above said, forgiveness sets us free. Perhaps that is the grace that I am looking for. That doesn't mean that my heart is left open to be trampled by any and all who wish to stomp on it. The doesn't mean that I have no hurts left, because I do. But in my quest for giving myself grace, I have to try to let go of those hurts and move forward. Unconditional love is not the same as unconditional trust, but maybe we can learn to get closer to that, no matter how far away that grace might seem.

Read this book. It is by far one of the best I've stumbled across in a while.

No Visitors Allowed

Ok, good news first: No, I do not have coronavirus, and I am not ill (besides the cancer, but y'know...). I am practicing a lot of social distancing and self-quarantine.

There are a variety of infographics, diagrams, and charts out there that explain in detail what social distancing means, so I won't go into that in a whole lot of detail.

Instead, I want to address the many people who have discussed or requested a visit with me.

The thing is, because I have cancer, I am immunocompromised. I am not as immunocompromised as I was during daily chemo/radiation, but my body is still spending time fighting the cancer, which means that my immune system is not fully equipped to fight off additional illness.

Last week, I had a follow up with the Rockstar Neurosurgeon to get the stitches out. He likes the way the incision is healing, but it is not completely healed yet.

We had a discussion about corona while The Husband and I were in the Rockstar Neurosurgeon's office. He broke it down for us. Individually, the chances of any one person catching corona are low-ish, but the nature of this illness is that eventually, it is a matter of when, not if, some individual will be exposed.

He recommends caution, and I'm all for that, which is part of why I rarely leave the house, and never leave without a mask and hand sanitizer available. We've been avoiding crowds and basically keeping distance from people. No hugs, no handshakes, no one closer than 6-10 feet during conversation.

I miss having the chance to socialize with friends, but the scary reality is that the Rockstar Neurosurgeon very clearly advised me that if I get this virus, I will end up on a ventilator, just by nature of being immunocompromised. In the past nine months, I've been hospitalized four times. I don't know if you know this, but being stuck in the hospital suuuuuuuuucks. The absolute last thing I want is to be back in a hospital any time soon. A Twitter friend posted this the other day, and I think it's important to share it as widely as possible:

Not sure who needs to hear this, but I haven’t survived almost a year with #Glioblastoma only to die from #COVID19. Stay home, folks. Protect the vulnerable. #btsm

— Aaron (@amhoov) March 11, 2020

Lots of people tell me how strong I am, which is very sweet and very kind, but I have a literal hole in my skull. I am part of "the vulnerable".

I have a close friend who lives in the Midwest-ish(?) who was going to try to come visit me. As we were keeping a close eye on this situation, we quickly realized that although we haven't seen each other in maybe 5 or 6 years, out of an abundance of caution, infection was not a risk we were willing to take, for either of us but especially for me. Her trip was canceled, she is still at home, and we are sad that we didn't get to see each other; however, so far I have managed to maintain my health, such as it is.

Making these difficult decisions is the opposite of fun, but we have to be realistic. We have to understand the risks. Don't panic, you probably have enough toilet paper, and you don't need hand sanitizer in your own house if you actually wash your hands with hot water and soap for at least 20-30 seconds. It doesn't even have to be anti-bacterial soap, considering it's a virus.

Anyway. For the time being, I have a stock answer for those who want to come visit.

If you absolutely must be in contact with me, write me a letter. I really do prefer pen pals more than text, email, etc. Send me a card. Write a quick note. Do you know how much it lifts my spirits to get mail that isn't hospital bills??

PO Box 203
La France, SC 29656

In the meantime, be safe, wash your hands, and cover your cough. You may be generally healthy and strong, but remember, not all of us are so lucky. Protect the vulnerable, the elderly, those of us at higher-risk. It's the right thing to do.

Surprise! Surgery!

Well, I hate to surprise you like this, but this goat rodeo got dropped on us with very little notice.

So, as you read this, I am having my THIRD surgery in 8 months. Surprise!

I've had multiple scans, both MRI and CT, in the last couple of months, and what appeared to be a spot may actually be tumor. My Rockstar Neurosurgeon is cutting the thing out. Due to a series of unexpected scheduling obstacles, we did not have much notice about this surgery.

So, as of right now, all I know is that I'll be in recovery for a few days before I'm released from the hospital. I will update as much as I can, but please be patient. It will be a loooong day, and I will post an update as soon as I am able to. In the meantime, please be mindful that The Husband has to go through the stress of waiting for me to get put back together like Humpty Dumpty, so he will not be able to personally update every person who calls or texts.

Also, as it is still flu season, it is unlikely that I will take visitors. This includes in the hospital and once I am home, at least until the surgical wound is healed.

The Husband will be taking care of me, like he always does, because he is awesome.

I know that many of you will ask what you can do to help. Right now, because we haven't met our out of pocket max, this surgery will cost a few grand, I'm guessing. To put it bluntly, if you want to help, you can donate through my GoFundMe, CashApp, or a good old-fashioned check in the mail. I hate to put it like that, but we are still working on paying down the last three hospital stays.

Well, I've never been to a goat rodeo. This will be awesome. Right?

New and very important boundary

This is an important message to all of my close friends and family, especially those who know when my birthday is.

I am not going to say when it is, because I've made an important decision. As an adult, I've never liked making a big deal about my birthday, again, because most of my decisions are based on receiving the least amount of attention. It's the reason I had a not-so-traditional wedding. It's the reason I've not celebrated my birthday in public in years, and it's the reason I have a fake birthday set on FB that remains private, only visible to me, so that FB doesn't remind people about a day that I don't wish to be reminded about.

I say all of this because the anniversary of the day of my birth is coming up at some point in the next 2-9 months. If you know when my birthday is, and if you value our relationship at all, you will not share it, and you will not wish me felicidades. You will keep that date a secret.

This is a hard line for me. I have too much on my mind and in my brain to deal with birthday wishes. My mental health depends on those of you who know this secret to keep it secret.

Something I've learned as a cancer patient is that boundaries are important, but even more important are consequences.

There are those of you who will long to celebrate my birthday by announcing something on social media, unattached to this blog.

Do not do this.

There are those who might try to subtly and secretly let my "special day" be known for their friends, the family of those friends, and the friends of that family.

Do not do this.

Some of you will want to do something special for me, because in some deep morbid corner of your mind, you might be worried that it will be my last birthday.

Do not do this.

Anyone who wishes me a happy birthday, knowing that I am dealing with brain cancer, brain cancer treatments, possible surgeries, and the mental health costs that come with brain cancer will be blocked without prejudice. This includes my best friend from college, my sisters, the one co-worker who knows the day, The Husband, even my mother.

Y'all. I am not playing with this one.

Please, I beg of you, especially my beloved family and friends who know when my birthday is: Pretend you don't. My mental health depends on it.

More Scanxiety

Last week, I had a brain scan.

On Friday, I met with the oncologist. There were more questions than answers. On Tuesday, I met with the neurosurgeon. Even more questions.

It may be anything from 2-6 weeks before I get more answers. Please don't take this to mean that we must panic for the next 2-6 weeks.

It means that we wait. Impatiently. Anxiously. But not panicked.

To pass the time, I am writing (more than just the blog!) and staying inside because I do NOT want the flu.

Anyway. Good times.

So how's everybody doing out there in the interwebs? Read anything interesting lately?

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?

Obligatory New Year's Post

Happy not-quite-so New Year!

So let's talk. I'm not making any resolutions. For 2019, my only resolution was to read 4 books a month. I was doing really well and keeping on track for the first half of the year.

Then this happened. I hate to admit it, but recovering from brain surgery, a second brain surgery, chemo, and radiation, all things that were completely out of my control, completely derailed my progress last year, and. If you must know, I would much rather have spent 2019 reading books, teaching, writing, anything besides have cancer.

Because cancer sucks.

So, no resolutions. Instead, I am going to look to someone who really inspires me:

Be water, my friend." Bruce Lee

Before I talk about Bruce Lee, I want to talk about 2019. 2019 was objectively and undeniably the worst year of my life.

Of course, there were bright shining sparks through the year.

• My 10 year anniversary with The Husband. 
• Having a student contact me long after the semester was over to tell me he was inspired to teach because of my class. 
• Reconnecting with the instructor whom I consider as the source of my own inspiration to teach.
• Making real and deep connections with students, including the dual enrollment high school kids, the non-traditional students like the single mom with two jobs or the Navy veteran who was so excited to finally use his GI Bill, I got to connect with students who were poets, musicians, painters, theologians, and photographers. I also made connections with students who had the STEM-mind and could engineer marvelous (and mysterious to me) projects. 
• These two clumsy goofballs who have learned the fine art of snuggling when the baby sister weighs ten times more than the older of the two.

 

 

• This ornery old man who brightens my day (and some nights) by patting my nose and singing the songs of his people (usually not simultaneously).

Of course, I could keep going, listing all the ways that 2019 was actually not that bad, but then I remember this.

I can sit here and say that being diagnosed with a particularly frightening type of cancer was a blessing in disguise. I can sit here waxing poetic about the amazing life lessons I've learned, the peace I've found, the acceptance that washes over me.

I would be lying.

This is not a blessing. Cancer is an a-hole. Not only is cancer an a-hole, but it strikes without discrimination. Cancer does not care if you are a good or bad person (I'll let you decide which one). Cancer does not care if you haven't fulfilled your life goals yet. Cancer does not care whether you deserve it or not. Cancer does not care if you had other plans.

I am not making resolutions for 2020 because the most important thing I've learned is that even if I make a plan for the near or far future, there is simply no way to know if I will be feeling well enough to actually follow through on the plan. I've already had to last-minute cancel plans with friends on multiple occasions because of the fatigue, the nausea, or the bad mood.

So, instead of making plans, I will try to be water. Yes, that means that I will do what I can to go with the flow. However, I do not want to be misunderstood. I have had to remind some people of my boundaries. It should not be forgotten that it was water that carved that giant hole in the ground. The Husband was very brave to get so close to the edge and I was terrified that he would fall into the Grand Freakin' Canyon and no there was no possibility that I would be joining him that close to the edge are you crazy?*

Look at that sexy beast!

What was I saying?

Oh yeah! It was water that carved that giant beautiful hole in the ground with The (Not Yet) Husband in front of it, and I want to be clear in communicating my boundaries yet again. Water can flow or it can crash. Be water.

*I realize that was a run-on sentence, and that I should have better grammar as an English Instructor, but I argue sometimes it is more important to communicate your point efficiently, even if doing so is technically incorrect.**

**Also, don't get me started on the use of standard grammar vs. non-standard grammar, and how people are judged by how articulate or inarticulate they may be. The use of so-called proper grammar has a time and a place, and sometimes the point is more clearly articulated by slangin' it up.

Flu season quarantine and the travel dilemma

Over the course of the last several months, I have had multiple invitations to visit friends and family, as well as multiple offers to have friends and family to visit me. While I love to travel, I don't know yet if I am allowed to fly; remember, I have a piece of skull cut out of my head (the so-called brainhole) which may affect my ability to fly. In addition, because I am on chemotherapy, I am immunocompromised. So even if I were allowed to fly to visit my friends, I'd be worried about catching some germ or the other, because I have gotten sick EVERY time I have gotten on a plane, including catching the flu in Florida and a horrible sinus infection on the way to Italy.

According to the CDC, flu activity in South Carolina is high.

CDC flu data

The absolute last thing that I want to do is have cancer AND the flu. What this means is that, with the exception of one event I might attend in a couple of days, I am putting myself in voluntary quarantine. The only person allowed in my house is The Husband because he is cute and I love him. Anybody else is barred from visiting. I will not be hugging or even shaking hands with people.

While I would love to travel to see my friends all over the country, the Gofundme would have to be much more successful for that to be a possibility, and to be honest, I probably shouldn't be getting anywhere near any red or orange states in the image above for the time being.

At least for now, I have to settle for being a homebody. If you want to visit with me, download Skype. Text me. Email me. Just no hugs!

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.

Books: When Things Fall Apart by Pema Chodron (part 3)

So let's continue talking about When Things Fall Apart. As a reminder, so far I've talked about embracing fear and being vulnerable.

Generally speaking, we as a society are incredibly uncomfortable with being uncomfortable. Awkward silences. Wardrobe malfunctions. Putting your foot in your mouth. Bad news. Embarrassment. Trauma. Catastrophe. We spend so much time hoping that things will go according to plan, and so much time fearing that they won't.

The Venerable Pema Chodron says that:

"Hope and fear is a feeling with two sides. As long as there's one, there's always the other . . . This is the root of our pain " (Chodron 39).

Diagnosis Day is a day burned into my memory as the moment that every single piece of my life changed. It was the worst day of my life. I am 38 years old. This wasn't supposed to happen to me. As I sobbed hysterically that day, I realized that I didn't know I was so afraid of dying until that Rockstar Neurosurgeon said the words "cancer" and "aggressive" and "incurable".

I've mentioned the abstract bus that could hit any of us tomorrow, but as I sat in that office getting that diagnosis, I saw the bus. That Rockstar Neurosurgeon pulled aside a curtain to show me how close it was. It was right there. It is still right there.

Diagnosis Day shined a light on my deepest fears, but hidden deep underneath of that was the inkling of an idea that maybe, just maybe, Rockstar Neurosurgeon was wrong. I couldn't help but hope that he had misidentified that bus; maybe it was actually just a skateboard.

It is easy it see how fear is painful. For me, fear is a product of weakness exposed. I make it my business to put on a strong face. People see me around town and always look so surprised that I don't look like I'm dying. Maybe they think I'm making it up, because how could someone make jokes about cancer, or talk about other aspects of life besides cancer, or smile or laugh while having cancer?

I put on that strong face and I smile at my friends. I make small talk. I go out to dinner. I have birthday celebrations with friends.

This is my First Face. It is almost disturbingly easy to put on that strong First Face and laugh off any of the uncomfortable things I experience. People say things that hurt me, but I smile and laugh it off. People fail to respect my boundaries, and I grin and bear it because I don't want to make anyone else uncomfortable. People look to me for comfort because they feel sad that I have cancer, and I grit my teeth because it shouldn't be my job to make you feel better about your discomfort about my diagnosis.

So here is something from my Second Face. Those who only see my First Face don't get to see how fragile my Second Face really is. It is incredibly difficult to admit, even to my Second Face family, just how afraid I am. The fear is always there, because this diagnosis is terrifying, and Prozac can only help alleviate that fear so much.

That's where The Husband comes in: he is so helpful when it comes to mitigating that fear, which is so very important. Sometimes I don't think he realizes how important he is for me. Because he makes me feel safe to let go of that fear, even for just a few minutes, he allows me to embrace that tiny nugget of hope that lingers in the back of my mind.

Fear is painful, of course, but embracing that tiny nugget of hope is also painful. Anyone who has experienced betrayal, trauma, or regret knows how painful it can be to have that nugget of hope slip right between your fingers.

And of course, following right after it is the fear that the tiny nugget of hope will be lost forever. How much does hopelessness hurt?

The beautiful thing that I have discovered is that there are tiny nuggets of hope to be found everywhere around us, if only we are paying attention. It is far too easy give up and embrace the fear. It is so much more difficult to leave yourself open to the possibility of hope, even if that also leaves you open to the possibility of pain.

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!

Time to Set Some Boundaries

My dearest friends and family, it is time to set some boundaries. This is not to say that any individual one of you has crossed these boundaries; however, I want to be sure that you know where I stand with all of this.

I've mentioned before my dislike of Dr. Google. To expand on this, I want to remind you that while I know you have only the best of intentions, the only medical advice I will be taking will be from my oncology team of people with fancy letters after their names. Unless you are part of that oncology team, you are not allowed to give me medical advice. I mean it. I know that coconut oil cures this and smoking cbd oil fixes the other thing, but I'm not gonna do it unless my oncology team tells me to do it.

In addition, I want to remind you that while I have been mostly open about my journey, there have been some parts that I've not made public. I am not obligated to share every single part of this nightmare, and I get the feeling that some of my readers feel like they have the right to every single update every single day. Sometimes, I will update every day. Sometimes I will not feel like it is appropriate to update every ugly detail of my day. And sometimes, I just won't have anything new or interesting to update.

The other thing I want to remind you of is that it is not my job to comfort you or make you feel better because you feel bad, sad, or upset that I have cancer. I have enough tears to go around, and I don't want yours. Of course, I'm not saying that you aren't allowed to feel bad, sad, or upset, but take that somewhere else, ok?

Right now, The Husband and I have a lot of people offering to help, or asking what they can do to help. I do not want to seem ungrateful, but at the same time, I want to remind all of you that right now, I'm hovering in this terrible waiting period. We don't know what we want or need, because we don't know what comes next, and that is hard. Next is probably clinical trials, but even that is a best guess for now. Once we know what to ask for, trust me, we will ask. We have gone way past shame and are firmly in the realm of asking, begging, pleading, or beseeching any and everyone if there is anything we think they might be able to help with.

I am still being very careful to protect my mental health. What that means is that some (most) of these boundaries which I am setting are intended to protect me. If you want to know how to help, help me with that.

Now more than ever, I am trying so hard to be more than just the Cancer Lady. I never wanted this diagnosis to define me. I still don't. In the spirit of all of that, please be mindful of my boundaries, ok?

We are in this critical waiting period, and I don't want anyone to think that they have crossed the line with me, but at the same time, I want to be clear about where I stand, and why I am taking this approach at this point in my journey. Thank you all for your love and support this this rollercoaster I never wanted to ride.

GoFundMe Link, and don't be Dr. Google

The Husband has put together a GoFundMe for us. Right now, we aren't quite at risk of being homeless, but medical bills are mounting quickly, and I am still not working.

So, before I post the link to the GoFundMe, we need to talk.

We need to talk.

Most of you have gotten a certain version of my story. You may feel upset, betrayed, or disturbed by the version of the story that I have shared. I want you to know that while I have been truthful with you, some portions of the truth have been omitted.

This is not because I have been sitting here thinking about ways to keep my story from you, my dear friends and family. This is because on June 27th, I received my diagnosis. The trauma of receiving this diagnosis led to me screaming, actually screaming, and crying, for the entire rest of that day.


When something traumatic happens to you, you go through certain stages.

• Denial
• Anger
• Bargaining
• Depression
• Acceptance

I tell you all of this because I want you to know that getting this diagnosis was traumatic. Because of my particular diagnosis, I had to go through these stages more quickly than others might, but that does not mean that I am truly at acceptance. I have, however, gotten to the point of accepting that I need to tell you the rest of the story.

So, dear readers, here's the rest of the story:

Remember: I said that because of my age, my health, and the fact that I have not had any seizures, the oncology team is confident that I can fight this. 

Bruce Lee preparing to fight.

On June 27th, I found out the name of the tumor that the rockstar neurosurgeon took out of my brain. I found out that this particular type of tumor is incurable. I also found out that it is fightable. 

So when you look at the GoFundMe link, you will read my story, but you will also see pictures that may make you uncomfortable. I know that I don't like to look at them because they are frightening. The fact is that my tumor was a glioblastoma. From now on, we'll refer to it as the G-word, because I don't want to talk about it. It's only been six weeks.

Many of you will be tempted to visit Dr. Google to find more information about the G-word. I will give you the same warning that my oncologists gave me.

Don't. Just don't.

Some of you won't listen. I know you can feel your fingers itching to open a new tab so you can ask Dr. Google about the G-word.

Seriously, don't.

So, here's the thing. Dr. Google is not on my oncology team. My oncology team is very good, very smart, and all of their names have the letters M.D. after them. I am taking medical advice from my oncology team. I am only taking advice from my oncology team. In fact, just like my oncology team recommended, I have not checked Dr. Google about the G-word, and I will not discuss what Dr. Google has to say about the G-word under any circumstances. According to a few people I know who have checked Dr. Google, it was the opposite of helpful.

Bad idea. Shouldn't have done that.

So now that you know the whole truth, here's what I have to say, and it is important:

I know that you all have the best of intentions, and some of you will choose to check Dr. Google about the G-word, but that is your decision. It might make you feel bad, it might make you feel frightened, and it might make you feel upset. Even with your best of intentions, I need you to know that if you bring this negativity to me, I will not be sympathetic. Ultimately, it should not be my job to comfort you about my incurable (but fightable) cancer.

Positivity is so important, and it is proven that positive attitude and strong mental health have an effect on outcomes. I don't want to push anyone away, but I must protect my own mental and spiritual health above all else. Your support and kindness have helped me so much. Please continue to help to protect my mental and spiritual health as I fight for my physical health.


So that's it. That's the whole story.

Deep breath. Here we go: GoFundMe. Even if you cannot donate, you can share it with everyone you know and anyone you don't know!