Behind the Picture

 I was surprised by how pleased I was with how these photos turned out. But I thought for my next post, I would tell the story behind them—because there is always a story.

The pictures were taken at my parents' 50th anniversary party. They had a small picnic for our family at a park called Flat Iron Mesa in Sandy, Utah, where we grew up.

Matt and I flew to Salt Lake a couple of days prior. Traveling is always hard for me, especially flying, but airports have become easier since I started using the Sunflower lanyard. It’s for people with hidden disabilities, and wearing it means you can use the ADA accessibility line at TSA and board the plane early. I also started doing things like wearing earplugs and sunglasses, which both help a lot for being sensitive to overstimulation.

Because I often get migraines when we fly somewhere, I came prepared. I wore a large black eye mask, a new neck pillow, and my sound-canceling Bluetooth headphones. When we got on the plane, a woman was breastfeeding her baby across the aisle from us.

Because I had tuned out the world after sitting down, I didn’t know that she moved to the unoccupied seats behind us. I don’t blame her. I have sisters with kids, so I know that any woman doing this, especially alone, is stressed out. An extra seat would give her room to manage everything.

Unfortunately, the baby began screaming. Not crying— screaming, louder than I had ever heard any baby scream. Even with sound-canceling earbuds in and the music turned up, the sound hurt my ears.

I know that the woman was struggling to get him to stop, but treatment made me more sensitive to loud sounds. Luckily, the baby eventually stopped. But then I kept feeling the plane moving, picking up speed as if it was about to take off, and then stopping again. Over and over.

You know this feeling. You keep thinking, “This time it’s speeding up more, so it will take off.” But it doesn’t. And then it doesn’t again. And then it doesn’t again. Usually, the captain doesn’t fill you in on what’s happening. Our flight had already been delayed by over an hour, and we waited on the tarmac for a good 45 minutes before finally taking off.

The stewardess came by with her cart to pass out drinks. I ordered a Coke Zero with a cup. I poured the Coke into the cup and drank a little. Shortly after that, as it often does, my right hand jerked involuntarily, spilling almost the entire Coke on my tray table and lap.

“Clumsiness” is a common symptom of brain tumors, but that word doesn’t quite do it justice. I sometimes refer to my right arm as my “Jimmy arm” (in reference to a Seinfeld episode where Kramer’s girlfriend keeps kicking him in her sleep.) That’s the best way I can describe it – it’s involuntary, spastic, and unpredictable.

The spilled Coke quickly ran between my legs and under my butt so that I was sitting in that sticky, wet mess. I stood up, but only halfway, because it had also spilled onto my tray table, and pushing it back up would have spilled even more Coke onto my backpack. Matt looked over at me and seemed confused. Normally, he jumps into action when I drop or spill something. Later, he told me that he had been watching a movie with his headphones in, so he didn’t realize what was happening. When he did, he handed me his napkins so I could try to contain some of the mess.

We called the stewardess over and she handed me more napkins—those tiny, paper-thin squares. She said it was the rest she had left. (Why didn’t she run to the bathroom and grab some paper towels? In fact, why don’t they have actual towels for such accidents?)

At least since I hadn’t thought to grab my hoodie and soak up the coke with that, I was able to tie it around my waist when we arrived at the other airport. It was okay that it didn't cover the front since it had mostly run under my butt rather than over my crotch.

It’s a funny story to tell now, but I had already been teetering on the edge of a migraine after the baby screaming, so when this happened, I knew it was coming. For the rest of the flight, I had to sit on my wet butt with that dreadful feeling of a migraine coming on.

At the Salt Lake airport, I took my time to clean myself up in the bathroom. I wanted to take off my underwear and hold it under the hand dryer, but that might have looked weird.

The airport has undergone major construction, so it's a hike to get from the B gates to baggage claim. When we arrived, no one was there, and the carousel had stopped. Our bags were right there patiently waiting for us. I was relieved to have one good thing happen.

We went out to the passenger pick-up to meet my parents. “I have a migraine," I said as I hugged them hello. These words have been uttered here too many times now.

We usually stay with them in Saratoga Springs, but this time we were only going to stay there the first night and the rest of the time at my brother Preston's. But he lives in Sandy, close to Flat Iron Mesa and only 20 minutes from the airport, so he let us come early because of my migraine. My parents dropped me off there instead of driving another 35 minutes to their house.

I felt bad that I couldn’t go to my parents’ after they drove all the way to the airport to pick us up. My dad was going to show us a part of the lake we hadn't seen before. They both love Matt, and we all enjoy each other's company. But it was a good choice to stay at Preston’s. It was cool, quiet, and a good place to recover.

Saturday, the day of the party, I got another migraine.

I always seem to get them right before something important. I hate it. I was looking forward to seeing my family and celebrating my parents’ rare and outstanding commitment to each other. The doctors say the migraines are not related to my tumor, but they are constantly interacting. During and after treatment, I missed countless parades, holidays, and birthday dinners, either because of migraines or other chemo symptoms. I don't vomit anymore, but when I did, it would sometimes trigger a migraine. I still have fatigue, and sometimes I get one if I don't take a nap when I need to. After finally (mostly) recovering from treatment, it doesn’t seem fair that they still happen.

Fortunately, this migraine had been shorter since I had taken my rescue med early. I took a nap and felt better afterward, so we made it. The party started at 4:30, and we arrived about an hour late, but we made it!

The Utah sun burns fiercely that time of day, and bright sun and heat are a couple of my triggers. I greeted my family and got a plate of food, but then my timer went off, so I took my food out to the car. I have to time myself, usually every 20 minutes, to take a break from almost anything I'm doing. I close my eyes, breathe, sometimes stretch a little, and check in with myself. After a few minutes, I realized it was more difficult to try not to spill any of my food in the car than it would be sitting at a table, so I took it back to the shade of the pavilion.

The pictures started a few minutes later. My cousin Lexi was the photographer. We began with my parents and siblings in the hot sun. Then we moved under the shade of some trees and included all the spouses and kids. They said we were done, so I began walking back toward the pavilion, but I heard my mom calling my name. They wanted a few more.

Then Lexi took some with each of my siblings’ families, and asked if I wanted some with just Matt and me. I was hot, tired, and drained, so I said no. Later, she asked again. I'm sure she was just trying to be nice, but I had to say no again. It’s hard for me to say no once, let alone a second time, but I was glad I did. If I had, I might have triggered another migraine.

Lexi did an awesome job. She was very patient, posed us well, and like I said in the beginning, the pictures turned out great. We all look happy and healthy, and it’s easy to think that everything is hunky-dorey based on a picture like this. But we have all had dark times in our lives. I try not to focus on them, but I refuse to pretend they don't exist.

I know that people want to believe that I'm okay. That over 75% shrinkage means that I’m all better and everything is going to be fine. It's undoubtedly great news, but it doesn't mean I'm cured.

So next time you come across a family member, friend, or even a stranger who seems to be in a bad mood, give them a little grace. Next time there’s a mean or angry employee who provides you with poor customer service, think about what their day could have been like. Maybe their mom just died. Maybe their boss just yelled at them. Maybe they had terrible parents who abused them. Their child has a serious illness. They have brain cancer.

Try being kind to them anyway. Show them a little empathy. You might be surprised by what happens next.

Defying Gravity

I have struggled to update my blog since I started treatment about two years ago.  I developed a tremor in my right hand and high sensitivity to light and digital screens. My heart broke when I realized I couldn’t write normally anymore, either by hand or on a keyboard. After treatment was over, I was only beginning my recovery.

Because of this, and some major personal losses to follow, I was more depressed than I have ever been. Still, I had a burning desire to share my experience with anyone who would listen. Matt suggested that I find a way to dictate my thoughts instead of writing, so I started recording journal entries on my phone. Later, I figured out how to do them on my computer, and transcribe them with AI. I could finally type without constantly hitting the wrong keys and then getting a migraine. 

Instead of trying to go back and recount what I remember about treatment, which is overwhelming, I am going to start where I am now and tell you about a dream I had last weekend. 

I was lying down in bed, in a bedroom, in a house where Matt and I were staying with some friends while traveling. We were flying home the next day.

I wasn't sure where Matt was, but I overheard people outside the room saying something big was happening. I got up, left the room, and saw a small group of people in the spacious living area, but couldn’t find Matt. So I started calling out his name. 

 

Floor-to-ceiling windows framed French doors that opened to a balcony in the back. I looked outside, and the sky looked more incredible than I had ever seen. There were massive, low-hanging clouds, so close you could almost touch them. They were a mixture of pink, blue, and yellow, with stunning, intricate depth. probably sounds pretty normal, but they felt different in the dream–they were almost alive, like electricity. It seemed like they were four-dimensional rather than three. It was too overwhelming to fully comprehend.

As I called his name, I saw Matt standing, hovering in the sky. He moved effortlessly toward me and descended onto the balcony. He clasped me tightly, like it was the first time we’d seen each other in a long time. I was amazed, and a bit afraid, but he assured me everything was okay.  Then he took my hand and led me into the sky. I hesitated for a second, but I knew I could trust him, so I walked into the sky as if it was totally natural. We embraced again, and it felt incredible. There we stood, weightless in the air. I whispered into his ear, "You were right. It's more than real.” He never described anything as more than real in waking life, but people who’ve had near-death experiences do. I guess that's why I thought of it in the dream.

But since I am a skeptic, I thought I would find out for sure if I was dreaming. "Meredith, wake up!" I yelled. "Meredith! Wake up!" 

It didn't work right away, but then I felt myself suddenly snap back into my body, or so I thought. I looked down and found myself lying in the bed from my dream. but then a split-second later, I felt my consciousness pop back into my “actual” body, and woke up. 

In my early twenties, before moving to Seattle, I listened to a radio station that often hosted a guest named Lauri the Dream Lady. She would interpret dreams for callers, but her explanations were not the typical "fortune-telling” kind. Her philosophy was that dreams are not literal, but symbolic, and their messages can help us navigate life. I emailed her once, describing a dream I had, and she interpreted it on her blog. 

In this dream, I was sitting at a small table across from my mother. There was a bowl of glitter in front of her, and she was blowing  on it,  scattering it everywhere. She was speaking to me in a very angry, threatening tone, and pointing down at the ground. This is something she used to do when she was close to losing her temper. I was very irritated, and had a strong impulse to bite off her finger. 

At the time, I was engaged to my first husband. My mom didn't approve of the marriage, but I didn't understand why. She said she thought I was too young, but she married my dad at 21. I was raised in the Mormon faith, and in that culture, it is very common for young people to get married at about that age, sometimes even younger. We argued about it constantly, for years. I was struggling to gain my independence. I felt I’d had enough of being told what to do. 

Lauri said that the glitter symbolized the ideal, “glittery” image I had of our engagement and subsequent wedding. By blowing the glitter away, my mom was spoiling that image. My desire to bite off her finger meant that I didn't get the “point” of what she was saying. 

And I didn’t. Within a year after the wedding, I realized I wasn’t ready to commit to one partner for the rest of my life. I was still just a kid, and we got divorced. So my mother was right. 

The dream I had last weekend seems to reflect what's happening in my current life. I often ask Matt to hold me whenever I am anxious. We both take a deep breath, hug each other tightly, and (usually) calm down.  Doing this brings down your heart rate and reduces your level of cortisol (the stress hormone.) It reminds me that I am safe, and to stay grounded in the moment. 

We have started to meditate, both together and separately. I started meditating in my mid-twenties after joining a weekly meditation group. The first time I went, I was quickly able to connect with what our teacher called “the Divine.” I sat near him, and felt my consciousness rise about a foot above the crown of my head. I remember having my hands clasped in my lap as I sat in the chair. I could see them in my mind’s eye, but I didn’t feel them. I had never experienced anything like it before. 

Almost as soon as Matt got interested and began meditating, he could reach that higher level of consciousness more effectively than me. Connecting with that power seems more important than ever, but it seems I am having a hard time getting there again... it has been years. 

It's like a switch was turned off inside me when I got my diagnosis. But I hope that with continued practice, I  can turn that light on again.

The Roadrunner

    I've struggled with nausea for months now, ranging from a faint unease in my stomach to sudden vomiting. I wrote about that in my journal, but have decided not to write about it on my blog this time. Instead, I'll tell a funny little anecdote from one of our trips to Arizona. 

    Matt has a doctor friend at work that has a beautiful vacation home in Paradise Valley, Arizona. He has invited us to stay there many times, so we finally did... twice within a couple of months. My parents were in Mesa temporarily for an LDS mission, so we visited with them. The second time we went because Matt wanted to go on a small trip to celebrate the completion of my radiation.

    On the first trip, we hoped to see a roadrunner but didn't (as Matt likes to say, we're "bird nerds.") On the second, Matt saw a couple and tried to point them out to me, but they were too fast. After Matt went to sleep one night, I made a plan to go to the botanical gardens the next day, knowing that a lot of the desert plants would be starting to bloom and we would probably see some birds.

We went in the morning to beat the heat (over 100 degrees at times), and saw a huge variety of cool cacti and bright flowers. We tried to go to something called the "butterfly pavilion," but it was closed off for some reason. Later on, we noticed that the gate was no longer closed, but there was now a long line building up, with no shade under the heat of the outdoor sun. Matt said that waiting in that line was not something I should do, and I reluctantly agreed. I'm more sensitive to heat than I have ever been before.

So we sat on a bench under the shade to rest instead. We watched a couple of cactus wrens hopping from branch to branch and down to the dry, sandy ground. They were interacting very loudly--we think one of them might have been trying to attract a mate.

And then it happened--a roadrunner appeared right in front of us. It was large, with a very long tail and brown-and-white-striped coloring. Its head looked kind of like a chicken with a distinctive mohawk and a longer beak. Its body was slender and streamlined. 

 Suddenly, a hummingbird flew nearby, and the roadrunner lunged towards it in an acrobatic flip-twist. It snapped its beak, but the hummingbird flew away. We both gasped as we witnessed this and continued holding still. I didn't care about missing the butterflies anymore. 

 A small family approached, and the mother asked what we were looking at. "Stop there if you want to see a roadrunner!" Matt said. They did, and then the woman asked half-jokingly if it really makes the "meep meep" sound, like the cartoon. 

Matt responded sarcastically. "Yes, it actually does."  

"Nooo." I said, laughing. I didn't know for sure, but my intuition and knowledge of birds said that it didn't. 

A few seconds later, after the family left, Matt and I heard a faint sound. "Meep meep!"

Matt and I looked at each other, jaws wide open between ear-to-ear smiles. It must have been the roadrunner, and I was completely shocked that it actually DID make that noise. Matt laughed heartily. He was just as surprised as me that his sarcastic remark seemed to be correct.

After cooling down in the gift shop, we saw another roadrunner. It was farther away this time, so we used our binoculars. It held in its beak a limp, presumably dead animal, probably a lizard, which it was beating against a rock. "What's it doing? Tenderizing the meat?" Matt joked.

I was fascinated by these roadrunners, so I later looked them up in a bird app called Merlin, which has recordings of the sounds each bird makes. Sadly, I found that the roadrunner does NOT, in fact, make the iconic "meep meep" sound! It actually sounds more like a chicken. 

When I told Matt, he was disappointed but amused, like I was. 

It's funny to think about all the emotions you can go through in a day--from awe and delight to disappointment and mild amusement. Life likes to throw a variety of these emotions at you and see how you respond. 

Right now I feel grateful for interesting experiences like this, and the ability to write about them. 

Radiating Positivity

Dr. Graber explained to Matt and I that I could have one of two types of radiation: proton or photon. If my radiation doctor said I needed proton therapy, it would have to be at their hospital in Northgate, about 28 miles away. If she decided after looking at my case that photon therapy would be sufficient, I could go to Valley Medical Center, which was only about 4 miles away. 

Needless to say, a roller coaster of emotions followed this news. I wasn't expecting it. I'd hoped that my tumor was going to stay the same size and shape indefinitely. Instead, my brain will be exposed to radiation, almost every day, for six weeks. I will lose hair. I will probably get very tired, and I also might have nausea and headaches. For me, that means migraines. The thought of handling more than I already do (sometimes over 15 a month) was daunting to say the least. 

Dr. Halasz, the radiation doctor I saw at UW, said that photon therapy would be a good fit for me. But when I saw Dr. Rhieu, the radiation doctor she referred me to at Valley Medical, he disagreed. He was a young man of Asian descent, very personable, easy to understand. We talked longer than I usually do with doctors. The way he explained things made complete sense to me.

 He said that although he hadn't actually seen my images yet, he'd read the report, and gave me several reasons proton radiation would be better. This type would shoot into my tumor and then disappear, while photon radiation would go through the other end of my brain, causing an errant spray of radiation and possibly causing another type of tumor/cancer. Proton therapy would cause less hair loss. It would also be better for my age.

But at the end of our appointment, I mentioned Dr. Halasz' opinion again. After confirming with me that she was an actual oncologist, he looked her up to verify that on the computer.

When he realized that she had in fact referred me to him, he said that he was not going to refer me back to her (he had mentioned doing that) because he would likely agree with her after reviewing the images. 

This was very confusing for me, making me feel more afraid than ever to receive treatment.

Matt and I had tried to manifest that photon therapy would be sufficient so that I wouldn't have to drive up to UW every day. Driving downtown or around UW triggers my anxiety. It probably does for a lot of people. Stress/anxiety isn't good for C-word. So it had been good news for us when Dr. Halasz said that photon therapy would work for me.

I scheduled another appointment with Dr. Halasz to discuss my concerns. She was surprised that Dr. Rhieu would even talk to me before looking at my images. She said that the hair loss would be about the same, and that the likelihood was low that the radiation would cause other issues. She could have me come in for a radiation simulation, plan my proton therapy treatment, and then compare the plans if I wanted. 

I didn't even want to drive up there for one appointment. 

I trusted her. I had already done my simulation at Valley Medical, and really liked the staff members I met there because they seemed like very friendly and positive people. Driving ten minutes five days a week would be so much easier than an hour. So we decided on the photon therapy.

............................

Radiation Simulation (The Mask)

They showed me how to use a little card to scan my bar code when I come in, state my name and birthday, hang up my jacket, and then lay on a table in an open room. They showed me a white mesh plate and told me that it was heat-sensitive plastic, which they would dip in hot water and then mold to my face. They warned me that would feel a little hot at first. I was expecting that hot meant scalding for some reason, but it wasn't. Cory, one of the radiation techs, actually mentioned one of his patients saying that it felt good, like getting a facial. It actually did. They stretched it over my face, and I was able to breathe freely through the holes. It felt fascinating to me. They molded the mask to my face with cool wash cloths as it gradually dried and hardened. It did feel kind of like a facial. 

Each weekday, I parked with my radiation oncology parking pass in the dash of my car, walked over to the radiation building, scanned my card, and waited for a staff member to come out and call my name. The other patients I saw were always much older than me. The first week I was placed with two women named Kathy and Alexis. Kathy was older with white hair, and Alexis was younger, with dark hair accented with blue and purple streaks. They were both nice, but Kathy complimented my shirts and the necklace I wore. 

The first day, I wore a shirt that both Kathy and Alexis got a kick out of. It has an image with the head of Dorothy crossed with the image from the Pink Floyd album Dark Side of the Moon. The "laser" is shooting into one ear, with the rainbow of a prism coming out the other side. It's a reference to the concept that you can watch the Wizard of Oz with the album playing instead of the normal audio, and there are parts that seem to be designed for the movie. I've done this, and although I don't believe the album was written for this movie, it's fun to watch this way if you're a fan. I like to wear shirts that go along with what I'm doing, and this one felt like it had a sense of humor about it. Kathy thought it was the best thing ever!

I also told Kathy about the necklace I was wearing the second day I came in. My sister Allison lives in Utah and sent it as a gift. It made me cry when I opened and looked at it. It's rose gold with a little heart charm and has a glass bead in the middle. If you hold the bead up to your eye against a source of light, you can see the image. It's a picture of the two of us from behind with her arm around me. "Keep me with my arm around you always whenever you are getting treatment... I'm with you. Cheering you on, putting my arm around you, telling you it's going to be ok," said on the card.

Kathy said that was beautiful, that she was a very good sister, and to be sure to tell her that. 

..............

The first week was hard. I'm sensitive, and my body almost immediately reacted to the radiation with nausea. The doctor initially gave me Zofran, but it caused me to be so constipated that I couldn't go number two even if I took Mirilax every day. So we tried Compazine, which I had a very bad reaction to. It made me extremely agitated. I tried laying down but was unable to stop squirming around. I took a walk, hoping that it would get rid of my excess energy, but it didn't work. I finally called Matt and asked him to leave work early because I couldn't take it anymore and needed his help. I threw up. That day was a blur of negativity. Thankfully, Matt saw me through until the end of the day, when it finally started wearing off. It's hard to explain just how bad I felt, and I was sure to report my reaction to the doctor. 

I also developed a cough in that first week. A cough plus nausea is a bad combination. I threw up a couple of times when the phlegm I produced made me gag. It took longer than usual to get over the cough, probably because my body was under the stress of radiation. Although I had initially tried smoking cannabis to combat the nausea (yes, I have experience with it,) I knew that it wasn't good for me to vaporize while I had a cough. So I used a tincture I had used previously, but it had a pretty strong lime flavor that wasn't good for nausea. I found a different kind at a local shop with a milder flavor, but even when you put a tincture that is designed to be absorbed more quickly by your body, there is a significant delay when compared to inhaling it. Anyway, it worked, better than the Zofran because it didn't cause constipation, and being intoxicated didn't matter much since I was spending most of my time at home. I certainly wasn't going to try the Compazine again. 

My cough finally began to subside about 2 weeks after starting treatment. My doctor also put me on a steroid when I started experiencing headaches, which I was told were probably caused by some brain swelling. It sounds so awful, but it's actually not that bad. It just feels sensitive when I lay down, especially on certain parts of my head. The steroid helped with both my nausea and headaches. 

Nights were hardest at first, but for the most part that was when I first started getting the swelling. Sometimes I would wake up in the morning with a bit of a headache, but it would go away after I got up and took my steroid along with a little breakfast. I lost ten pounds fairly quickly at the beginning, but then my appetite was vastly improved by the steroid and I quickly gained it back.

A couple of weeks ago I started to experience what I can only describe as a change in my taste buds. I haven't lost the sense of taste completely, but I began to crave foods that have a lot of flavor or spice... something that I normally avoid entirely. I have done some research on how c-word cells use glucose as energy, so I've tried to avoid sugar, but the other day I went to two stores just to try some strong flavors that my taste buds would enjoy. I got spicy Doritos, mustard and onion pretzels, oreo mint ice cream, black and sour jelly beans, and cinnamon taffy. I know that Doritos aren't healthy and I may have been craving them because of the cannabis. I have always enjoyed the flavor of black licorice, even though I know it's a very divisive topic. But the flavor didn't do it for me. The cinnamon taffy and sour jelly beans did! 

This weekend's been interesting. I started noticing a change in my vision in my right eye. The doctor said this could be the radiation or steroid, but it should dissipate a while after treatment. It comes and goes. Last night, I developed a headache, but I'm glad I went with my intuition and iced it, took a hot bath, had a popsicle, and slept with the head of my adjustable bed up. I didn't take Relpax. I usually do for migraines, but it makes me feel so awful and these headaches are different. This morning the headache was gone, and best of all, no Relpax hangover! 

3/31/13

My dog is slowly losing her eyesight. If she is able to live happily anyway, I know I can. I remember walking a dog that was completely deaf and blind. Even on days when it was raining, he would start to run and frolic. It must have felt so good to him just to feel the wind on his face and smell things in the air, so I try to do those things when I walk.

I've been meaning to make a list of the things I'm grateful for, so here it is.

1. I'm grateful for Matt and everything he does for me. An extreme example of something he's done? Let's just say that things have been coming out of both ends, and he didn't care; he still wanted to come in and help me. He has sat with me, coaching me through hours of pain, nausea, vomiting, etc. 

2. I'm grateful for our home. It took us a while to get one because the market was so competitive. But we both love it. It's comfortable, cute, and has a great yard. 

3. I'm grateful that Matt just got an unexpectedly large raise. It helps even more with the next thing I'm grateful for...

4. Disability. My migraines got to the point that I could no longer work, and I was approved when I combined it with my new condition. I was told that I would definitely be denied the first time and that I would probably need a lawyer to get approved. For me, that wasn't true. 

5. My dog Ruby. As I said in the beginning of the post, she reminds me to live in the moment. She is the sweetest dog I've ever met. She barely barks, is so quiet, and rarely any kind of bother. She's adorable and loves to cuddle in her old age. 

6. That we are fostering or adopting a cat. I'll go into the story of adoption in another post, but we will probably get one after our trip to Arizona since it's coming up and we won't have to figure out a sitter or leave him/her alone. Caring for a new animal will quell my nurturing side for now.

7. Restorative yoga, my teacher Trudy, and the other women who come regularly. They are all older than me, but it doesn't matter. They care about what is happening to me and wish me the best. I feel that they are behind me, cheering me on.

8. I'm so grateful that I don't get seizures. I didn't realize this until recently, but they are usually the thing that prompts doctors to have their patients get scans which eventually lead to these kinds of tumors. Mine was just a visual disturbance... scary, but not as scary as a seizure. Seizures mean that you can't drive for six months to a year, depending on the state you live in. Matt and I hope I will never get one.

I'm thinking about getting a tattoo on my inner forearm that says "Here Comes the Sun," with a sunrise incorporated somehow. It would serve as both a reminder to me and a reference to relentless positivity to others. I've thought about getting one for at least half of my life, but didn't feel I had a profound enough reason. If this isn't one, what is? 

Hope

2/15/22

"It's not your fault. It's not your fault. It's not your fault."

These words have been echoing in my mind since yesterday. For some reason, I cried through almost the whole session with my new therapist. That never happened with my previous one. 

She said this at the end of our session, after I realized that I'd been blaming myself again. In the book "Radical Remission," there are several stories about c-word patients who knew they needed to change something in their life in order to heal. So I've been searching for the reason this happened to me. 

"Life is chaos," my friend Chelsea said. She was diagnosed with stage III Ovarian C-word a couple of years ago. She had a total hysterectomy, early menopause, and immediate treatment. 

The variety of opinions on this is confusing. Two of them completely oppose each other and are, in my experience, the most common beliefs. Either you have full control over your life, or you don't. 

If you have full control, the way you think dictates what happens in your life. Thoughts become things. This seems mostly true in my experience. Holding onto that belief gave me a renewed sense of control and improved my mental health. But after the MRI results I got on Monday, everything felt out of control again. I felt, in a sense, that I had betrayed myself. I had hoped that the MRI would show that the cyst they initially saw had disappeared, so when it essentially doubled in size instead, my heart felt torn into pieces. 

I felt similarly after my MRI in November. I had hoped, even believed, that my tumor was not going to grow. I spoke with a woman whose astrocytoma hadn't grown for 8 years, since it was first discovered, so she hadn't had any treatment yet. I hoped that would be the case for me.

On top of the heartbreak I felt, I wondered if I had been wrong to put off treatment in order to do the IVF. But Chelsea reminded me that I hadn't been, because motherhood was something I really wanted.

A week or so ago I spoke with my sister Jordan. I was doubting myself again, and wanted to ask her if she thought having children would be worth it (watching her with her kids hasn't always looked fun or glamorous.) "Yes," she said unequivocally. She said that it was hard to describe, but mentioned feeling things like butterflies in your stomach. Unconditional love. A whole new world. It was exactly what I needed to hear. 

I know that I need to stop doubting myself. Yes, the MRI didn't show what I'd hoped for. I had hoped that the cyst would disappear like the spot my doctor saw on my MRI after my surgery. It didn't work out that way, but that doesn't mean that trying to think positively isn't worth it. It still makes the majority of this process easier. 

The session with my therapist also may have been exactly what I needed. Yes, the crying gave me a migraine, but I think that I needed to cry. I have to let the sadness out sometimes. 

2/25/22

I feel I've experienced years of emotions in a week. As if it wasn't enough that my cyst grew, the fertility doctor called me a few days ago, right before Matt walked in the door. She told me that the embryo we thought we could use has an extra chromosome #21. It was listed in the biopsy report as low mosaic, which the educational modules they had us watch had told us are almost as good as "euploid" embryos. Euploid is what you want, ideally--it means that the embryos appear normal. But neither of the other embryos which made it to the freezing stage were euploid. They were not usable. 

"That's disappointing," I said, holding back the true emotions I felt, such as shock, disbelief, and even betrayal.

"My husband and I have decided that another cycle is out of the question," I told her. A "cycle" is about a two-week period where you inject the drugs they give you and then retrieve the eggs at the end, but a lot more goes into that. Actually, the most stressful part for me was not the side effects or injections, but the logistical stress--I had to drive about an hour during rush hour about every other day, and applying for and securing financial assistance involved a lot of calls and paperwork. I have to start radiation now, and although it technically can be done, it would be difficult to do both at the same time. She said apologized and referred me to a genetic counselor to discuss the odds that the baby would have down syndrome. I only started to cry at the end of the call, when Matt walked in. 

I told him the bad news, and then became hysterical. I broke down and cried out, moaning, releasing the emotions that erupted from my soul. Matt told me that he felt it too. That he wanted to cry, but didn't for my sake. It always makes me cry to see him crying. After a few minutes, I took an Ativan to calm down enough to prevent a migraine. Eventually, we agreed that we couldn't afford to dwell on it. My health was more important. 

It hurts much less to accept something than it does to resist it. I'm not going to secure an embryo right now, and that's ok. We can try again after my treatment, or go for the natural route. Maybe the chemo drug will damage my ovaries permanently, but maybe it won't. And yes, I will be older. But that's ok. My older sister conceived without a problem at almost 41, and my oldest sister did at 44, after two miscarriages. On top of that, my cousin, who now has two healthy children, recently told me she did around ten cycles, which I didn't realize before. So maybe we will have children, and maybe we won't. Either way, all hope is not lost. 

The Wrench

Originally, this post was going to be about migraines. Relpax, my migraine rescue med, is not considered safe during pregnancy. This was the "wrench" I referred to in my last post.

I would soon face another road block.

As usual, we met with Dr. Graber after my last MRI. After exchanging the usual niceties, he asked how I'd been feeling. My throat dropped into my stomach as I answered him, because I knew what that question meant. I had felt like something was wrong.

Dr. Graber explained that my MRI had shown a small change in my tumor, so I had to start treatment soon. He had told me previously that pregnancy is not safe for a year after radiation. My chemo drug could also cause infertility. 

"Well, I guess that makes the decision for us," I said through tears. "We're not going to have kids."

"That's not true," Dr. Graber said. "People have babies all kinds of ways these days." He referred me to UW's fertility team.

While waiting to speak with a fertility doctor, Matt and I looked into some options. My mom reminded me that my cousin had frozen her eggs, but we knew that it was a prohibitively expensive procedure, one that insurance companies don't usually cover. As a side note, I realized that fertility treatment is unequal in this country. You can do it if you are wealthy, but if you are poor, you usually can't. Health insurance coverage for fertility services is now mandated in some states, but ours isn't one of them (yet).

A few weeks later, the fertility doctor said that the chemotherapy drug I would be taking was likely to damage my ovaries. Luckily, because of my diagnosis, I qualified for a cheaper fertility package offered through Livestrong. It was $6,500 to retrieve my eggs instead of the usual $18,000-$20,000. This didn't include the expensive medications I would need, but there were a couple of other c-word related programs that would probably cover them.

Needless to say, I felt a huge sense of relief. We had options that I didn't know we had. So we made the decision to retrieve my eggs before my c-word treatment so that I could have children later on.

The next couple of weeks felt very rushed, infused with the pressure of time. The process was more complicated than I'd anticipated. I got an email with a long list of things I needed to do, including genetic testing, applications for financial assistance, consent forms, a pre-anesthesia appointment, an ultrasound, education modules, genetic testing of embryos, instructions for obtaining medications, and more. It all needed to happen before I started treatment, and we were hosting Christmas Eve dinner this year.

I had nearly constant doctor's calls, so it turned out to be a good thing that I didn't take my last job offer (not to mention the fact that I am starting treatment soon.) I had time to do the education modules, take calls, and even cook for Christmas Eve dinner. 

I was overwhelmed. I had moments of resistance. I wanted to keep things simple, so I thought that maybe I would throw it all out the window. But I recently had a session with my therapist, and she reminded me to view this experience as something I want instead of have to do. Sure, I could skip all of this complicated shit and just hope that my ovaries would still be intact after treatment. Freezing my eggs is not natural. But Matt and I really want this, and I won't have to worry as much about whether or not I'll have children when it's over.

My sister Alli and I had a conversation today. I asked her if she thought it was selfish of me to have kids. She said that it was the opposite and a "leap of faith." Sometimes there are spiritual reasons for things, so I said that this may have happened because my body wanted something to grow inside of it. I could just be trying to make sense of what is happening, but she agreed that it was totally possible. She reminded me that I have "the best guy in the world to take care of and raise a child" if I die... that he would rather "keep a piece of me with him than not." And she's right. She also said that she would help him, and make sure the child had every possible opportunity. The conversation made me cry, but it also made me feel better about my decision.

The next couple of months is going to be an adventure. I expect plenty of ups and downs, but I think I've learned to ride the waves better than I used to. We will start the fertility treatment after visiting my parents in Arizona at the beginning of January, which will take about two weeks. Then I'll start radiation. I'll go into that more in my next post, but for now, I will focus on the magical process of ensuring my procreative future. 

The Bird Nest

There are aspects of this experience I haven't gone into yet because they're so personal. 

I grew up in a family of eight, and when my youngest sister was born, I was old enough to experience the bliss that babies can bring. I was delighted by her toddling existence and saw the joy she gave my mother.

After high school, almost every girl I knew started a family, some right after graduating. I got married at 21. It only lasted about two years and I left before we had any children. After the divorce, I told myself I'd never marry again. I didn't want children unless I found a lasting relationship. But my relationships weren't lasting into my late twenties, so I moved to Washington state for a fresh start.

A few years later, my life was still not where I wanted it to be. All of my siblings were now married, and my relationship issues remained. My career wasn't fulfilling. In the meantime, I saw countless pregnancy announcements and baby pictures on social media.

In my mid-thirties, a customer from the post office set me up with Matt. On our first date, he said that he would take care of me. It seemed funny at the time, but the sincerity of those words became apparent very quickly. We moved in together about a year later.

At a doctor's visit, my PCP asked about my living situation. I told her that I had moved in with my boyfriend, and she asked if we wanted children.

"Maybe," I said.

She said that if so, I should try to conceive within the next year or two, because my risk of miscarriage would increase after turning 35.

As our relationship progressed, Matt and I agreed that we wanted children, but felt that we had some time. We got engaged and eloped about six months later, in March 2021.

You can read about my initial symptoms in the third section of this post.

After my scans, my neurologist referred me to a neurosurgeon. Her name was Dr. Srinivasan. She said that she wouldn't usually suggest a biopsy based on my symptoms, but that it was "something to consider" if we wanted to conceive. It involved creating a small hole in my skull in order to access the brain tissue with a specialized tool.

Dr. Srinivasan also explained that the mass was causing something called a Chiari Malformation. My brain stem was extending abnormally below my spinal column and crowding the space through which spinal fluid flows. The pinching of this space caused my pain and visual symptoms, but I could have a relatively simple procedure to ease them. They would shave down a small section of bone from just underneath my skull, creating more space for my spinal fluid to flow.

Dr. Srinivasan referred me to Dr. Graber, my oncologist at UW. This was confusing and a bit terrifying to me, because so far they were still insisting that they didn't know what it was. I remember how surreal it felt to enter an area of the hospital called the "Alvord Brain Tumor Center." Dr. Graber said that although it was clearly our choice, we may want to get the biopsy so that we knew "what we were dealing with" before conceiving. So we decided to have the surgery and biopsy at the same time.

To read more about my diagnosis, please read the bottom section of this post, or the article I wrote for Cancer.net. Then come back and finish this one!

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When asked about a prognosis, Dr. Graber said that out of a sampling of 100 people with my grade of astrocytoma, people lived an average of 5-8 years after their diagnosis. "That's such a short amount of time," I thought as I choked back the tears. "I can't have children now."

Dr. Graber was also honest about the risks of conceiving. He said that my migraines could get worse, and if the tumor started to grow during pregnancy, I may have to make a "heartbreaking" decision. Since overall swelling happens during pregnancy, I could experience more pain in the back of my neck and/or headaches.

This type of c-word may be slow-growing, but it is terminal. If I am lucky enough to successfully have a child and live eight years, wouldn't it be difficult for that 8-year-old child to lose their mother? When, and how, would Matt and I tell them about my condition? How would we explain that we purposely conceived after my diagnosis?

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A few weeks ago, Matt and I saw a chickadee flying into the aqua-colored birdhouse on our porch. I had used it as a decoration for years, and we were surprised by the thought of having a nest. So we decided to look. Matt carefully pulled the back open, and there Mom was, lying in a small nest of green moss, brown twigs, and bits of white fur. She seemed surprised to see us, but didn't fly away. Matt quickly but gently replaced the door.

I decided to name her Venus, and we called the father Mars. Venus would be laying eggs soon if she hadn't already. A few days later, I checked the house when I knew both parents were gone. Venus had lain five tiny white eggs with brown speckles.

Matt and I had planned a trip to Canada, so we left knowing that the eggs might hatch while we were gone. A couple of days after our return, we saw that one baby had hatched. He already had feathers and a mouth almost as wide as his head. I named him Cupid and smiled whenever I heard his tiny baby chirps.

The birdhouse was on the ledge of our porch, facing West. The afternoon sun shines hot there, and there was a heat wave coming, so Matt became concerned about Cupid and the remaining eggs. We found a sail-style shade at our local hardware store and installed it in front of our porch. Temperatures rose into the upper 90s, so we decided to also provide some water in a small birdbath. Cupid eventually fledged, but we don't think the other eggs hatched.

I shared this story because it seems symbolic. Caring for living things comes naturally to both of us. I enjoy fostering animals, and Matt helps me. But there is an existential element to my desire to have children. I want, as Shelby from Steel Magnolias says, "a little piece of immortality" to leave behind when I am gone. This desire became even more poignant after my diagnosis.

I am a member of a Facebook group called "Astrocytoma Adults." I recently posted the link to my blog, and two mothers with the same diagnosis as my own reached out. One of them, named Jamie, also has a t-word that can't be operated on. She told me that she had two children after finding out about it. It seemed that Jamie also battled with the decision at first, discussing it with her husband and neurologist. "You just have to live your life," her neurologist said. Even though Jamie had similar qualms about the future, she didn't want to have regrets. And she doesn't. Her tumor hasn't grown, and she has gone eight years without having any treatment.

It was a relief to speak with other women who understood what I was going through and find the hope that I was looking for.

We may not know how long I will live, but no one really does. What if I choose not to have a child, and in eight years I regret the decision because my t-word never grew? Some astrocytoma patients live to old age, or even miraculously heal from glioblastoma (a very aggressive form of brain c-word.) "You never know," Matt and I have started saying.

So I told myself before my last scan that if it was stable, I would go off birth control. It was, and I did. Other than my parents, I was surprised that my PCP was the first to give her blessing. I hadn't been to her in a couple of years, so I was extremely nervous to deliver the news of my diagnosis and then declare that I wanted to conceive. But she didn't bat an eye. "I think it's great, and that you'll quickly succeed." 

But then something else threw a wrench in the plans I had finally made.

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