Category: Health

 

When your body hurts all the time, it’s remarkably difficult to love yourself.

You want to push back against the pain… fight it. Reject it.

I recently read a short story by Stephen King called “The Little Green God of Agony.” The story was converted into a web comic in 24 installments by Dennis Calero, if you want to read it. It is very well done, in my opinion.

In this story, a man’s chronic pain is caused by a demon that has infested his body. For years, I thought of my pain this way… not in so many words, but in essence. I treated my pain like a foreign thing that had infested my body. I fought it, and in fighting it, I distanced myself more and more from my own physical self. My body was essentially my enemy—causing me pain that I had to cope with constantly.

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I treated my pain like a foreign thing that had infested my body.

 

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When I was preparing for my first brain surgery over a year ago, I knew I needed to do something different. I had tried meditating a few times and never found it very helpful, but I decided to give it another shot. I downloaded an app called Headspace and went through the “pain pack.”

Using the app, I learned to stop fighting my pain. Instead, I settled down with it. I sat with my pain and let it be. It reminded me of holding onto my frantic puppy, Lila, when she’s scared… usually due to fireworks or thunder. I needed to be calm and supportive of myself the way I am for Lila when she gets scared; I needed to love myself unconditionally.

Just being there, calmly sitting with myself through the pain, taught me to start loving my body again. My depression and anxiety—which I had learned were closely associated with physical pain—lessened as a result of this change in tactics. I became an advocate of myself instead of treating my body like an enemy.

I’m still working on this issue. At times, I find myself fighting the pain, or treating myself or my body with scorn. It hurts! But love is stronger than hate, and pain, and scorn.

I will love myself better. I will love myself.

I will keep loving myself.

 

*Content Warning—This post contains medical stuff that might gross you out*

After three brain surgeries, I think I’m finally all sorted out.

The first one, over a year ago, was to remove an epidermoid brain tumor. I’ve talked about that plenty on my blog, so I won’t repeat it here.

The second surgery was on September 13th, 2018. I had developed hydrocephalus from the first surgery and was leaking cerebrospinal fluid (CSF), so they had to perform an open craniotomy to repair the leak from the other side. Unfortunately, because my CSF pressure was so high (about twice what it should have been), the leaking continued.

I woke up with the biggest black eye I had ever seen. It looked like a purple/black baseball stuck to my face. The whole right side of my head was HUGE. I also couldn’t chew, and could barely open my mouth, since they had had to peel off my temporalis muscle from the bone for the surgery. As painful as it was, I was happy to have my mental faculties in a good place. The only thing that was really difficult with the recovery was how easily I tired out; I couldn’t even do simple, quiet activities like reading or watching TV for very long at all without feeling worn out.

When Brendan and I went back to UW Medical Center two weeks later to get my craniotomy staples removed, the doctors saw that the leak wasn’t fixed and admitted me back into the hospital right away. That was… shocking, to say the least. Brendan and I hadn’t even brought a change of clothes, since we thought we’d be driving home that afternoon.

What happened that evening broke me in a way I had never been broken before. They did a lumbar puncture with very little pain medicine (since I wasn’t in the ICU, there were limits to what they could administer) and with me fully awake and alert. I can’t really talk about it. I’ll just say that it’s something I will never do again without heavy sedation.

Anyway, the doctors had my sign papers agreeing to a sinus patch surgery. Then, sometime in the wee hours of the morning—like, 3:00 or 4:00, I can’t remember exactly—one of the surgeons woke me up and told me there was a change of plans. They had decided that since my CSF pressure was so high, no patch would hold. Therefore, they had decided to put in a shunt.

All I knew was that I would have a permanent device on my skull, and tubing that went from my brain’s ventricles to my abdomen to drain the excess CSF fluid. I signed the consent papers for the surgery.

The next morning, they performed the surgery, placing the shunt on the left side of my head since the right side was still healing from the craniotomy. They had to attach the shunt itself to my skull in one place, then they drilled a hole behind my left ear to place the catheter tube, which goes from my brain ventricles (where the CSF wasn’t being absorbed properly) all the way down to my abdomen, where the CSF could be absorbed back into my body.

There were a few incisions down my torso that they used to guide the tubing. The big incision was in my abdomen itself. They had to feed the tube through my muscle wall and peritoneum. That incision is still healing, and periodically, it causes shooting pains through my belly. My head is pretty lumpy now, but the incisions are almost fully healed.

When I first got the shunt, I had to go back to the hospital and have it adjusted twice, since it was draining too much fluid. Low-pressure headaches occur when you don’t have enough CSF, and they feel like migraines that medicine can’t relieve.  It means your brain isn’t protected like it should be, and sitting up and standing are excruciating.

Eventually, we found that having it adjusted twice was too much, and the leaking had started again. So we went back to have the shunt adjusted one last time, and now it seems like my levels are just right.

Third time’s the charm, right?? I’m so pleased that we finally figured everything out. Thanks for sticking with me, everybody!

 

I’ll make this short. I’m exhausted, and my checkin time for surgery tomorrow is 5am.

This surgery will fix the leak in my head. It will be an open craniotomy. It will hopefully be the last brain surgery I need.

I am scared, but also feeling pretty brave and “let’s get this done”-ish.

The dripping must stop.

This will hopefully be the last tumor-related post for a while. I’ve given this enough of my time and energy.

The egg-sized brain tumor is gone. (Please excuse the extremely lazy animation…I’m really weak, bros.)

Recovery ended up being much longer than anticipated—the average stay is four days, but I was in the hospital almost two weeks. Complications… nothing that is too serious now. Everything is back under control somewhat. Let me just say that I had NO idea how important electrolyte balance was.

Here, I mainly want to recognize some people. First of all, Brendan Quinn. That dude can HANG. He slept on these horrible chairs the whole time I was in the hospital, just so I wouldn’t be alone. Even though my meds are making me into a swollen blimp person, he somehow makes me still feel attractive. He held my hand during procedures, got me water, called nurses, ordered me food—he did everything I needed. I don’t know how I could get through this without him.

I also want to recognize my mom and dad. Mom has been hanging out at the house with me, helping me with laundry, dishes, food…pretty much anything. She’s been AMAZING. My dad has helped me understand all of the medical stuff that’s going on with me, and helping Brendan with stuff around the house, too.

Camdon Wright (along with his wife and kids) sent us tons of videos while we were at the hospital! You have no idea how boring recovery is. Nobody warns you about that. It’s really depressing to not be allowed to sit up or anything. I couldn’t even read or play mobile games for most of my recovery, because I couldn’t focus on anything. The videos were hilarious and awesome.

Erin Anacker has been a constant inspiration and help to me as well. It’s been so nice to be able to talk to someone who has been through very similar circumstances. Erin has helped me by giving me a special pillow, and like, TONS of advice.

Our friends Becky and Damon put together a bunch of easy recipes that we could make in a rice cooker so we wouldn’t go broke eating out! We still haven’t even gotten through it all!

There are more. I know you and I acknowledge you, but I’m getting too tired to write. Please know that I appreciate you. I love you.

Thank you.

 

WE DID IT!!!

Kaiser is covering the surgery! I’m so, so relieved. Now I can focus on the surgery itself, and making sure my family and I know what to expect, how long the recovery will be, etc.

Since I don’t know how much we will end up having to pay, I’ve turned off donations. I’m hopeful that the money already raised will cover our costs.

I feel like a broken record at this point, but THANK YOU so very much to everyone who has supported me with time, money, or well wishes. <3 <3 <3

Well, my friends, it seems like all of the blood, sweat, and tears of the last two months has finally paid off! Without your support, I think I would have given up by now.

As I was gathering my notes to try, yet again, to get my appeal expedited (Kaiser had just sent a letter saying my appeal could not be expedited because waiting would not “seriously jeopardize [my] health or ability to regain maximum function,” despite the fact that two neurosurgeons—including Kaiser’s own appointed surgeon—said that delaying surgery would put me “at risk for catastrophic vision loss”), I was informed that my appeal had gone through. The woman on the phone said that Kaiser’s previous denial had been overturned.

I broke down right there, and got off the phone as soon as I extracted a promise from the woman to send me the approval letter immediately. What followed I can only describe as some sort of howl. It was a primal noise of frustration and maybe grief. (I have been looking online for a sound I could post here to give you some idea of what I mean, but nothing was right).

All of the terrible frustration and helplessness I’ve felt for the past two months just came pouring out of me, and it was so loud! I think I scared my poor dog to death.

Afterward, I felt…deflated, or something. Then I felt guilty, because I wasn’t overjoyed like I thought I should be. But I made a promise to let myself feel whatever feelings come up, no matter what.

Right now, I feel so happy. So grateful. I’m still wary…I’ve only been officially granted authorization for office visits to Dr. Ferreira, but I have hope that they will also grant surgery. Thank you again, my beautiful friends and family.

(please enjoy the elephant drawing a did ages ago…sorry for being lazy)

You don’t know how to talk to me. You don’t know what to say.

I get it. I really, really get it.

Long ago, when I lived in Eugene, I was having lunch at a restaurant in my neighborhood when a friend I hadn’t seen for a while popped in. We said hello and hugged, and he sat next to me. When I asked him where he’d been, he said, “My father died.”

I gaped. I stumbled around for something to say. I literally said, “I don’t know what to say. I’m sorry.” My friend seemed unperturbed by my behavior, but all I could think was, I hope he leaves. The situation was so uncomfortable for me that I just wanted out.

That was years ago, and I’ve since learned a little about how to talk to people in crisis and in heavy emotional situations. Last year, I lost both of my grandfathers within two weeks of each other, and my uncle a couple of months later. It was a time fraught with difficult emotions—grief and loss, especially. I found myself having many, many conversations around death, and I was both on the receiving end and the giving end of sympathy from others.

At that time, I was able to empathize, and instead of offering platitudes, I let myself sit in the uncomfortable feelings of anger and sadness, and I even allowed myself to feel all the other weird, complex feelings that didn’t seem rational.

So here we are. I have a brain tumor. I’m getting it taken out on June 23rd. And I’m fighting tooth and nail with the insurance company that doesn’t want to pay for it.

What the hell can you say?

I’ve been reading a book called Option B: Facing Adversity, Building Resilience, and Finding Joy. The authors, Sheryl Sandberg and Adam Grant, talk a lot about how others can approach the “elephant” in the room, and some of the myths that friends and family have to get past in order to talk to you about tragic events in your life. I’m going to paraphrase ideas from the book and add my own takes.

Obstacles to Conversation:

1. You think you’re not allowed to talk about your own problems. Well stop it! I know my friendships are largely one-sided right now, but I want to restore the balance between us. I care about you and I want to help you through your troubles, too.

2. You don’t know what to say or do. Call me up or text me and ask if you can bring over a coffee. Ask if I need a ride to the store. Let me know you’re in the area and ask if it’s a good time for a visit. More specific is better…if you just ask if there is anything I need, it will be tougher for me to answer you.

3. You think talking about the brain tumor will make things worse. Nope. If I don’t feel like talking about it, I’ll let you know and we can talk about other things. Please don’t be afraid to bring it up.

4. You’re afraid of saying the wrong thing. Okay, you might. But it won’t be the end of the world. Emily McDowell Studio has a line of empathy cards that are fantastic examples of what to say to people going through serious shit. One of my favorites says: “When life gives you lemons, I won’t tell you a story about my cousin’s friend who died of lemons.” (Yes, someone I know actually went into a diatribe about how many people die in surgery when I said I was having brain surgery).

   

   

That’s pretty much it for my advice about how to talk to me. If you want to be extra nice, you can try to convince me I’m not a huge burden right now. I’m trying to convince myself of that, but I could use a little teamwork. And if you see me slipping into self-pity mode, just remind me of how many amazing people have shown their support through rides, phone calls, and GoFundMe pledges. I don’t need pity, and I certainly don’t need it from myself. I’m so freakin’ lucky!  ; )

If you’ve actually read this far, thank you! Thank you so much for caring about me enough to read this enormous blog post. Even for the peeps not reading this, I love you all! Thank you for being there for me!