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!

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

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?

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

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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6 Things That Helped me Think Positively During Cancer: A Patient Perspective

This article was originally written for and published by Cancer.net. Some of the information may be repeated from previous posts.

Last year, my husband Matt and I drove to a park in Seattle, Washington. As we walked to a wooded area, I noticed a blurry spot on the left side of my vision that gradually turned into a larger crescent with jagged edges that were moving and flashing. Bewildered and disoriented, I told Matt, who led me back to the car.

I contacted my neurologist, who suggested a CT scan. The scan showed something in my brain that an ensuing MRI confirmed, so my neurologist sent me to see a neurosurgeon. The neurosurgeon flipped through images of my brain, cross-sectioned like sliced ham, and pointed out a whitish blob without defined edges. She said that they weren't sure what it was, but if it was a tumor, it could not be fully removed due to its proximity to my brain stem.

Upon getting this news, there was plenty to be negative about. I'm only 37. I just got married last year, and we wanted to start a family. It felt like horrible timing. I've struggled with anxiety and depression my whole life, but over the years, I have been able to find coping mechanisms. Facing this new challenge pushed me to remember what strategies I had in my toolbox. So Matt and I talked and decided to expect the best outcome. We tried our best to think positive thoughts and believe it was only inflammation. 

We eventually decided on surgery to ease my headaches and get a biopsy of the area. About 10 days later, my oncologist told us that it was grade II astrocytoma. In other words, it was the “big C”: brain cancer. 

At first, it was hard to believe that our positive intentions hadn't worked. I even blamed myself for not being positive enough. But eventually, I realized that it wasn't something I could completely control. Matt and I ultimately decided to continue to think positively.

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A couple of weeks after my surgery, my oncologist asked if my surgeon had mentioned the "spot" on my post-surgery MRI. Confused, I said no. 

"There's what we call an enhancement, which could just be a leaky blood vessel, or an indication that the cancer has spread,” my oncologist said. 

I was too emotionally tired to react the way I normally would. Matt and I discussed our action plan. While recovering from the surgery, I vividly imagined the doctor telling me that this "spot" had disappeared without explanation. Matt did the same.

My next MRI was a few weeks later, followed by an appointment with the radiologist to discuss the scan and potential treatment. A polite, friendly woman with dark hair knocked gently on our door, introduced herself, and got to the results. "That spot we saw has disappeared, and we're not really sure why,” she said.

I was blown away. Matt and I smiled behind our masks and shot knowing looks at each other. It seemed to us like our positive intentions had worked this time, and we were thrilled to receive some good news.

What has helped me think positively during cancer

It hasn't been sunshine and rainbows since getting my diagnosis, but I still believe in the law of attraction. I believe that if I think more positive thoughts, I will attract more of the positive things I want in life. Although I can't do this 100% of the time, thinking this way as much as possible has yielded positive results.

Grade II astrocytoma is considered slow-growing, and I don't have to have further treatment unless an MRI shows that the tumor has grown. Because of this, I can focus on the emotional aspects of my diagnosis without the physical trauma of treatment. I also have a loving and supportive husband and family who have stayed positive throughout this challenging time.

If you have received a difficult diagnosis, here is a list of things that have helped me think positively throughout my experience.

1: Getting therapy. 

Therapy gave me the opportunity to talk to a professional in a safe, private space. Most therapists are empathetic listeners, and you might be surprised by just how much it helps to discuss what you're going through. Talk with your doctor about starting counseling and finding a therapist near you.

2: Decreasing or eliminating social media time.

If you tend to compare yourself to others like I do, I found this to be essential. You can freeze your accounts instead of permanently deleting them, or you can change the notification settings on your phone so you won't be prompted to log on whenever someone posts or comments.

3: Consuming only positive media. 

My therapist gets credit for this one, and it's made a huge difference in my attitude. This includes avoiding TV news for most people. Instead, I recommend watching TV and movies that make you laugh.

4: Doing whatever makes you happy, whenever you can. 

I like doing almost anything involving animals, which currently involves birding and fostering kittens. Make a list of the things you enjoy and try to do them more often in your spare time. I’ve also found that if you're feeling depressed, just going outside can often help.

5: Living in the moment.

I found there are many small things you can do to help bring you back to the present. For example, look closely at flowers or anything else you find beautiful. Pay attention to how your dog or cat's fur feels when petting them. Or breathe deeply and enjoy hugging someone you love.

6: Keeping a "positivity journal." 

My therapist gets kudos here, too. After my cancer diagnosis, I started writing down things that I was grateful for, that I found inspiring, or that made me smile or laugh every day. This prompted me to really look for and think about the good in my life. A journal app on your phone can make this easy.

I know that I am only at the beginning of my cancer journey, and the advice of “staying positive” might seem glib coming from someone who hasn't been exactly where you are. But I’ve found that our minds can be incredibly powerful in pushing us towards better health.

Those of us diagnosed with cancer have been reminded of just how fragile life is. That is a perspective that many people don't have. Through cancer, I’ve learned to relish every moment, and even when things don’t turn out exactly the way I want them to, I’ve found that I can still fall in love with life in the meantime.

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Reconnecting

June 1, 2022

 

You might think that I would feel worry-free after the good news I received from my last scan. Unfortunately, this isn't the case. For some reason, there was actually an uptick in my feelings of sadness and anxiety.

My situation hasn't shown up in my dreams yet, and sometimes it takes me a minute or so to transition from ignorant bliss to waking reality. I made a sign by our bedroom door that says "Thank you for my healing miracle!" written in capital letters on yellow paper. But it's hard to feel grateful when I first wake up. 

After I shared my blog on social media, my old high school friend Kathryn sent me a Facebook message. She asked for my address. Later, she told me that she felt compelled to tell me something. Her husband was diagnosed with stage 4 melanoma several years ago. He was given a 17% chance of living and had come close to death for almost a year. But then the FDA approved a drug, they tried it, and it healed him. 

I remember meeting Kathryn through some mutual friends in high school, and gravitating toward her because of what a nice person she was. We became friends, exchanged notes, talked about boys, and laughed a lot. It was heart-wrenching to imagine what she had been through, but I was glad to know that her husband was spared and that she decided to share this inspiring story with me. "There's no reason why you can't have a similar miracle," she said. I agreed.

I was expecting the card I received from her in the mail about a week later, but not what was included with it: a very generous Grubhub gift card with a list of the 18 women who had contributed, many of which I hadn't spoken to in 20 years. 

"I don't ever want to hear you say you don't have any friends again," Matt said as I tried to suppress the tears.

I emailed my blog to everyone I remembered in my contact list. My soul was ready to reconnect with as many people in my life as I could. I've forged a sort of cocoon around myself for the past year, strengthened by the isolation caused by COVID-19.

I received a response from Teela, my best friend from childhood. She moved to Montana when we were in fifth grade, and although we wrote to each other for several years, we hadn't seen or talked to each other since. She sent her love and told me she had a lot of friends that were going through similar things.

Laura, a former fellow cheerleader and friend, emailed me back, sent her thoughts and prayers, and thanked me for sharing my journey. She asked if I was going to our high school reunion. I knew our 20-year was coming up, but I hadn't thought to check the Facebook account for my class lately.

I haven't been to any of my class reunions yet. I considered going to this one, partly because of the generous gift cards my old friends had contributed to. But I just let the cat out of the bag on something that I don't normally go around advertising. I felt ready to put it out there, but it's much easier to write than talk about. I didn't want people to feel awkward, treat me differently, or even bring it up. 

My graduating class's Facebook page encouraged members to submit "before" (high school) and "after" (present) pictures to be in a slideshow at the reunion. I figured that if I wasn't going, I might as well submit my pictures. I also happened to be going through a large bin of stuff my mom gave me, and I thought I might find a high school picture.

Going through the bin felt like a slideshow of my life. My mom must have saved everything I ever did in school. There were countless report cards, awards, drawings, and assignments. But there were also pictures, including one I had never seen before. It was Teela and I standing next to my parent's old station wagon. I'm wearing a little denim jacket with my arm around Teela, whose hair is pulled up into a side ponytail. I couldn't resist sending it to her, and we ended up talking on the phone after almost 30 years.

But probably the most poignant contact was from Chelsea, a customer I became friends with when I worked at the post office. We lost touch over the last year or so. Chelsea said that she hadn't reached out because she had been going through something similar.  About a year ago, she was diagnosed with stage 3 ovarian c-word. Needless to say, I was dumbstruck. 

Chelsea said that reading through my blog was helping her work through the trauma of it all, and that she could relate to my emotions very well. It's hard to describe what it was like to hear that. I was sad, of course, but I also felt a deep sense of joy, not only because my writing had helped someone, but because I knew that our friendship would be rekindled in a very meaningful way. Suddenly, I had a friend that I could talk to about all of the emotions unique to being told that your days are numbered. I didn't know that this would be so helpful until it happened.

Chelsea has already experienced far more difficult things. In the past year, she had a 14-centimeter t-word removed during a total hysterectomy, terrible chemotherapy, and a myriad of side effects including instant menopause and the loss of all her hair. They brought her CA125 down to the miraculously low number of eight, but that didn't rid her of the nightmare. Her oncologist told her that the type of c-word she has is very aggressive and has a high recurrence rate. 

One of many things we have discussed since then is that after your diagnosis, you are changed in a profound and irreversible way. Life feels completely different and you know that it will never be the same. People's everyday problems suddenly seem so trivial.

This kind of perspective can be a blessing. It can help you become a better person. Even so, I sometimes wish I could go back to not knowing, like I do in my dreams. 

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