Radiation gave me a heart attack

I had the radiation done on my brain yesterday, and I must admit, I feel a little like the boy who cried wolf. In my defense, I really didn’t know it would be that easy. I expected to lie on the table bolted into my mask and feel all kinds of panic as radioactive beams shot through my skull. Instead, I walked into the room, lay on the table and got screwed down, then promptly fell asleep. It was all very quiet and peaceful. When it was done, the only panic I felt was that nothing happened, but the technician assured me it did and it went well. So took my mask as a souvenir and went home.

When we pulled up to the house, this is what greeted me:

  

I’m not sure whose idea this was, but all the hearts lining my sidewalk had notes from friends in my ward—grownups, Primary children, and seminary students—wishing me well. There were also some fun balloons, Epson salts for a hot bath, and this t-shirt from my Berlin Besties:

An hour or so later, a big pot of homemade chicken soup and some yummy rolls arrived care of one of my favorite Relief Society sisters. My VT came by with deedees (blankets) for my boys she'd made out of Bear Lake fleece (how perfect is that?), and another sweet friend brought by chocolate after giving my kid a ride home from practice.

All this because I dozed off for forty minutes or so in a radiation room. I feel a little sheepish.

And a whole lot loved.

Because I WAS scared. I was petrified. But notice the past tense. When the time came, I felt strangely calm and a little excited—finally, we were taking concrete action against the Bear. And I walked into that cancer center armed with the prayers, temple remembrances, and love notes of my army.

So thank you for the battle armor. Once again, I have no words (but not because they’re gone! Sometimes words simply aren’t big enough for the feelings I want to share). I am so humbled by your expressions of support, but even as I want to wilt under your kind thoughts, my heart soars to know you are thinking them. Y’all are making me strong.

Before we left this morning, Brad gave me a blessing and a big squeeze, and whispered in my ear “Today’s going to be a good day.” Turns out, he’s psychic. It was a good day. 

No, wait. It was a great day.

Facts update: It will take a long time to know if the radiation worked. I'll have a scan in three months to see if the brain lesions are gone—the nurse practitioner said the radiation starts the killing process, and over the next few weeks the cancer should shrink away. Any scans done before three months won’t reflect the overall effect of the zappings. In the meantime, I will meet again with the immunotherapy doctor to get that ball rolling. He said something about doing a brain scan at four weeks to determine if we could start the immunotherapy, but now I’m wondering if I heard him right. If that does indeed happen, I will post those results. Fingers crossed this worked.

What I'm afraid of

As I've mentioned before, my treatment will be in two parts: radiation for the lesions in my brain and immunotherapy for the lesions in my liver. I found out yesterday the brain radiation will happen this coming Thursday.

I'm doing stereotactic radiosurgery (SRS), which is kind of like surgery with radiation. It is a one-time event in which radioactive beams are aimed so they cross at the exact location of my tumors, producing a high-powered zap that should kill the cancer cells. I had a mask made, which is a plastic mesh cage that fits tightly around my head and face and will be screwed to the table so I can't move during the treatment. I'm told the table will shift and turn to put me in the correct positions for the zappings. It should be weird--I fully intend to take advantage of the Ativan I've been promised--but it won't hurt. It's like getting a killer X-ray.

One thing I appreciate about Dr. Scruggs (my new radiation doctor) is how seriously he is taking this procedure. In addition to his team of nurses and technicians--who all get things done when they say they will--he has included a neurosurgeon on my case, whom Brad and I met with last week. Dr. Michael will be present for the SRS just in case something happens when they zap my tumors, and he'll also be ready should we need a Plan B after the radiation is complete.

There was a question about two of the four spots found on my brain, and I learned yesterday that these two tiny mystery spots are not cancerous, so we'll only need to radiate two lesions. This is good--less time in the mask. Of the two cancerous spots, one is small and expected to respond well to the radiation, but one is bigger and could be concerning. The big one is 2.4 centimeters in diameter and deep in the center of my brain, just to the right of the cortex. Dr. Michael told us radiation is a good first option for tumors less than three centimeters, but sometimes they don't get all killed off. It's possible this big one may not die all the way. In that case, we'll need to consider more/different radiation, or possibly open surgery. Either way, let's hope we don't need Plan B. Because the tumor is so deep in my brain, things could get hairy.

You see, this is what really scares me: I don't want to lose my brain. I'll just be honest--I really love it. I love the way it thinks, and I love all the stuff in there I've collected over the years. If I had to name my best feature, it would probably be my mind. I love using it, and I love what it produces. (Is this braggy? I don't mean to be braggy. But I really like being in my own head. I crack myself up all the time.)

Most of you know my favorite thing to do is read--many of you may not know I am currently writing my second book. It has been a dream of mine to publish something worth reading, and last year I finished my first attempt at a historical fiction novel. Frankly, it's very much a first attempt and something of a mess, but I had a publisher interested, and that encouraged me to start a second story. The second book is about half written, and I'm loving it. Loving it. My goal was to finish by the end of 2017, but then this cancer thing happened and it's been difficult to think about fiction when real life is so heavy.

My personal goals have been derailed, and I don't like that, but I can live with it if it's temporary. What I can't stand to think about is that it could be permanent. I am so afraid my brain will be damaged by the tumors or the treatment, and the voice I have in my head--the one that comes up with all the words I love--will be silenced. My only question for Dr. Michael when we met him was this: based on where the tumors are, what might I lose? He told me the part of my brain where the big lesion is located controls motor function on my left side. Okay, I thought. I'm okay with that. But then he said language and speech come from all areas of the brain, and my heart froze. Please no, I thought. Don't take this from me.

I'm trying not to have a pity party, but as my radiation day approaches, I'm feeling a growing sense of fear. I really, really, really don't want my brain messed up. SRS is the best option for killing only cancer cells without affecting healthy tissue, so I'm hoping with everything I have that it works.

So many people are praying for me, and the prayers and accompanying peace have been such a gift. I'm asking now for prayers that Thursday's radiation procedure will work. If you care to pray, please ask that I can keep my words. I don't want to lose myself.

Elder Spencer Bitner!

Photo: Reina LeGrand Photography

Last night, Pepper opened his mission call and announced to a houseful of friends he will begin his service mission at Deseret Mill and Pasta in Kaysville, UT on October 30.

It's kind of confusing because the letter said he was called to the Dallas Service mission, but I think that's because his mission president is our stake president here in Texas until his records are moved to Utah, where he'll live with Brad's parents and serve at the pasta plant. But he will for sure be at Deseret Mill and Pasta. We've had multiple phone calls with the people running the plant, and they are eagerly awaiting his arrival. Our plan is to drive him to Utah at the end of this month and spend a weekend getting him settled in. Since we don't have a date yet for my radiation treatment, I'm not sure if I'll be able to go, but Brad will make sure he's there and ready to start on Oct. 30.

Pepper is thrilled at the prospect of spending the next two years in this service. He'll work basically a 40 hour week at the plant, plus have opportunities to proselyte occasionally with traditional elders in his stake. The rules are a little different from a traditional mission--he won't have a companion, and he's encouraged to participate in institute and YSA activities with other young people his age. But he'll be serving the Lord and dedicating his time to helping others. And he'll probably get to drive a forklift.

This boy has jumped at every chance to do splits with missionaries and anticipated his own missionary service for years. A service mission is the perfect way for him to give his time to the Lord, and I'm so grateful to my in-laws for making this opportunity possible.

Elder Spencer Bitner. My boy. I think I may burst with happiness.

What I'd rather think about--Pt. 2

Today was a darn near perfect day. If I had to pick a day to live over and over again, this one would be in the running. It started with a lazy morning, then a couple of errands that worked, which means I didn't get stuck in traffic, and the stores I went to had exactly what I needed exactly where I thought it would be. Then, baseball.

It's no secret I love baseball. To me, it's the perfect sport--bleachers on a warm night, a cold Diet Coke, conversation with the other spectators, the thrill of watching my kid wallup the ball. I even understand the rules and can (mostly) follow the game.

After the game today (conjure image of 85 degree weather, a comfy chair in the shade, and a win by one run), one of the moms sent us these little baseball cards of our players. You'll see Luke is known as "Waffles" on this team. This is why: at the first practice, one of the players introduced himself as "Laken, like bacon" so the kids would know how to say his name. Unfortunately for Laken, all anyone heard was "Bacon," so Laken has been Bacon ever since. Well, Luke thought that was The Coolest, and he decided he should have a breakfast food nickname, too. So...Waffles. That is literally all anyone on the team calls him--coaches, players, parents. He is Waffles.

Except to me. I can't seem to stop yelling "Go Shmukie!" whenever he steps up to bat, which earns me the look of death from the plate. Sorry, Shmukie...er, Waffles. Moms are the worst.

Then, after an afternoon of baseball, I got to join my Mann on a triple date with some of my favorite people.

Anthony and Mary Mercado were in town for work/seeing their daughter, so we arranged to meet for dinner. Then the stars aligned, and Todd and Debbie Hansen texted to see if they could come see me. It just made sense to combine the fun and have a mini Clarkston ward reunion, so we did.

Todd was our bishop when we lived there, and Mary was my partner seminary teacher, so I feel like these people are my family. Heck, I could say that about anyone from the Clarkston ward--I don't know what it is about that little pocket of the universe, but it was our Camelot from 2003 to 2009. As a friend once said, "once a Clarkstonite, always a Clarkstonite." There is something about that ward and the people there that engulfed and embraced us, and I will always have tender memories of our time among them. Tonight was a lovely piece of that.

So, see? A perfect day.

Man, I love my life.

What I'd rather think about

Cancer. Blech. Is anyone sick of me talking about it yet? 'Cuz I'm sick of thinking about it.

So let's take a break from the sappy Lifetime movie that has become my life and focus on all the other stuff going on. All the other GOOD stuff.

Sooooo, I live in Texas, and there is something that happens here in Texas that does not happen anywhere else. I introduce you to the Homecoming Mum:

This is a hardcore Texas tradition. Hard. Core. When a guy asks a girl to Homecoming, it is mostly to the game--the dance is secondary--and he gives his date a "mum" that she will wear all Friday at school, then to the football game that night. I think the tradition started with a nice chrysanthemum corsage, but over the years, the Homecoming Mum has grown. Now there are all kinds of "rules"--stuff like seniors' mums being white, and making them personalized, and using the high school colors, and making sure they're not lame (small and/or boring). The girl gives her guy a garter, which is a boy version of a mum he'll wear on his arm. This is a big deal, y'all. You don't mess with the Texas mum--and you make sure you do it right. Texas teenagers (and their moms) can get all kinds of judgy when it comes to mums.

So when Adam told me he'd asked N to Homecoming, I felt a stab of panic. Mums are waaaaaay outside my non-crafty comfort zone, and with all the other stuff filling up my brain right now, I didn't know how I'd ever figure out a mum for him to give his date. But then I remembered a woman in my ward posting pictures of mums she'd made her daughter, and I shot her a quick text. Sure enough, she is a mum-making expert, and even better, she has a heart of gold. This sweet lady took over the mum project for me and refused to let me pay her for her time, even though she spent hours planning and constructing the perfect mum.

And thanks to her, these two were all smiles Friday morning when they exchanged mums and garters:

How cute are they? This makes me so happy.

The facts please, ma'am

It occurred to me, as I looked over my last two posts, that I haven't been very clear about my diagnosis and what exactly the "bear" is that I'm fighting. I think I've been so overwhelmed with all the feelings circling around my cancer news that I haven't stopped to explain the actual facts of what is going on. That probably isn't fair, as vague details tend to take on a life of their own, and pretty soon we've got stuff like this happening:

So, in the interest of keeping things real, here are the facts as I understand them:

My cancer is metastatic melanoma, which is a spreading cancer that starts on the skin. Mine began twelve years ago on my right foot and was removed, but apparently not before it left a bit of itself behind. That little bit stayed in my body and we now know it attached itself to the lymph node under my left arm. That lymph node is gone--removed--but as soon as doctors learned the cancer was melanoma, they knew they needed to look further. Melanoma likes to attach itself to the brain and liver, which is exactly where they found it in me.

I have four melanoma spots on my brain and two in my liver. Yes, it is skin cancer, but none of it is on my skin now. I do not have brain or liver cancer--those are different animals. Melanoma is a distinct cancer with its own patterns and personality, and my treatment will target melanoma specifically. Now that we know the exact nature of my cancer, I am under the care of Dr. Cowey at Baylor in Dallas, who specializes in melanoma research and treatment. As he put it, he's my quarterback (this is Texas, after all) and will oversee the various treatments and doctors needed to attack the different sites of my cancer.

The best line of defense against melanoma is immunotherapy. This is new to me, and I'm still learning about it, but Dr. Cowey explained it this way: my body's immune system wants to fight the cancer cells, but melanoma cells have a way of switching the healthy fighting cells to 'off'.  Immunotherapy is drugs they give me to keep the fighting cells 'on', so essentially, they will use my own immune system to fight the cancer. It is apparently not as difficult as chemotherapy, but it's no picnic either--drugs are drugs, and there could be significant side effects. They've given me a laundry list of side effects to be aware of, and basically it looks like I will likely have a rash, sick stomach, and cough for the duration of the treatment. This could last anywhere from six months to two years.

The good thing about immunotherapy is that it works throughout my whole system. It should kill the lesions on my liver and also attack any other small melanoma creepy-crawlies we don't know about yet. The exception to this is my brain; brains are surrounded by a protective blood barrier that won't allow the immunotherapy drugs in at the same strength as everywhere else. That's why we will treat my brain lesions with radiation.

Right now, the brain radiation is our top priority. I mentioned in my last post how frustrated we were that our original radiation oncologist didn't follow up on the tests needed to get this treatment going. I can't start immunotherapy until at least four weeks after the brain radiation is complete, so this needs to happen ASAP. When Dr. Cowey heard what happened with that other doc, he referred me to a new radiation doctor, Dr. Scruggs, who is waaaaaaay better. Dr. Scruggs specializes in stereotactic radiosurgery (SRS), which is a fancy way of saying they use high-powered, precisely-targeted radioactive beams to zap the lesions in my brain. They will zap all four spots in one session, and I'm told almost none of my healthy brain tissue will be affected. The downside is that if there are tiny spots we can't see yet, they won't be killed, but I am willing to go back for multiple checks over the years rather than take a chance on radiating my whole brain now and possibly damaging the parts of myself I value most. There is a lot of high-tech prep involved, which we're doing now, and I will probably have the actual SRS sometime during the week of Oct. 23.

So, there you go. Probably more than you cared to learn, but now you know as much as I do. And now that I'm done typing this, I can get back to making cookies for Ferris Bueller's bake sale. I hear that dude is really sick...

There is no darkness here

A couple of years ago, a friend and counselor in our stake presidency made a point that resonated with me. He said that if we are in a dark room and someone opens a door to a lighted hallway, the dark will always dissipate when confronted with the light. However, if we are in a lit room, and someone opens a door to a dark hallway, the light in the room is not affected. I liked that. It made sense. Light is always stronger than darkness.

I have said that since my cancer diagnosis, I’ve felt an unusual sense of being lifted, which I believe is a direct result of prayers, love, and good thoughts being sent my way. It’s like I’ve been living in a warm, brightly lit room, which has been a surprise. A good one. A really, really good one.

Y'all are giving me light.

Some of this light, interestingly, has come from people I don’t know. Several of Brad’s work colleagues have rallied around him and therefore me. His boss, who is in Michigan and I have never met, has given Brad carte blanche to leave the office whenever he needs be with me. This means I have had Brad with me at every doctor’s appointment, navigating the traffic in Dallas so I don’t have to stress about taking the wrong on-ramp (I'm not kidding—you should see the spaghetti bowl freeways here) and figuring out parking. I have loved having him with me as we listen to doctors, and even more, I have loved holding his hand as we talk and drive home, knowing he cares at least as much about everything as I do.  This time with Brad is by far the best support I could have, and I am so grateful for the people he works with who are picking up the slack so he can be with me. On Monday, Brad even came home from work with a beautiful quilt made by one of his coworkers who participates in a “prayer covering ministry.” As I understand it, they make a quilt and pray over it for someone in need, then give that quilt to the person with a note of hope that the quilt will provide comfort, solace and a reminder of God’s love. Such a lovely thought, and not the least lessened by the fact that I don’t know the givers.

I have also been on the receiving end of hundreds of texts, phone calls, hugs, visits, flowers, voice messages, meals, prayers, tearful looks, arm touches, and just plain concern from people I do know. I believe the Lord has prompted people near me to do just the right things, and these good people have acted on them. I had one friend bring me a bouquet of flowers “just because” literally two hours before I got the call that my tests showed cancer. Another friend saw a text in which I only said I’d gotten bad news that day, and she hustled her sweet self over to my house thinking I needed a hug. I did. So badly. That was the night I found out the cancer was in my brain, and I was alone while my family was at the church for youth activities. Without even asking what was up, she wrapped me in her arms and hugged me until I could stop crying long enough to let go. It was like having my mom there, which is the highest compliment I can give. On another occasion, a good friend had the audacity to apologize for tearing up and not being stronger. Please. Your tears are like gold to a miser. Your tears make mine okay.

People pop by with cards and treats. I think one of my favorite things was the night a group of teenage girls showed up with a box of candy to give me a group hug. I thought it was sweet--my sixteen year old Adam thought heaven had arrived in our living room. They were his friends, and knowing they cared enough about him to wish me well meant the world to him. My visiting teacher keeps great tabs on me, showing up with food and a smile as often as I’ll let her. Surprise packages have appeared on my doorstep, full of thoughtful gifts from faraway family members who want to do something. My kitchen table is now cute thanks to my sister, and last night I snuggled on my couch with the softest blanket in the world, sent by my sweet cousins. As lovely as the gifts are, it is the thought of the people behind them that warms my soul.

Of course, through all this both my family and Brad’s family have been right there with phone calls and texts and occasional tears, and that has been huge. I have a couple of family members with cancer stories of their own who have reached out, and that has been particularly meaningful. We are all connected, and we are close. I have never felt alone.

And you, my farther-away friends, have blown me away. When I posted my news on Facebook, I expected I’d get some comments wishing me well. I NEVER could have predicted the onslaught of kind thoughts, memories, hugs, and offers of prayer that came my way. With each comment, I imagine your face and hear your voice, and I remember some snippet of the past when we were together. It has been amazing to see people from my whole life and thousands of miles away gathered together in the comment sections of my post and this blog, and I wish there was some way to convey how this has filled me. It has literally put me on a high. In fact, as I sat here thinking of all the notes, calls, texts, and comments, I had the thought, “This week has been amazing! I wish everyone could have cancer so they could feel like this!”

Then I mentally slapped myself, because that’s just stupid. Nobody should have cancer. Except Hitler.

Because honestly, this sucks. I wish so hard I could think of something else, that this bear didn’t take up so much space in my life right now. I can see that yikes look when people see me for the first time after hearing, that panic that they might say something to make it worse. I don’t want to be Cancer Girl, yet it’s all I can think about, and honestly, it helps to talk about it. It helps to cry about it. 

So thank you for lighting my room. This week, some of those dark doorways opened. Along with the shooting in Las Vegas, which devastated us all, I had some medical appointments that reminded me I’m up against something very serious. I was fitted for the mask I’ll wear when they do the radiation treatments on my brain, which felt strangely both dehumanizing and deeply personal. I guess I’ve never thought of my brain as a substance before—it’s my mind, it’s just me. Now I feel very protective of it, and the thought of it—me—being attacked is painful. 

My fears were further exacerbated when the radiation oncologist I was working with dropped the ball (when you tell your patient to hurry and get a fancy MRI so you can plan her treatment, it shouldn’t take a curious phone call from said patient A WEEK AND A HALF LATER to make you realize the hospital didn’t send you the results). That one was hard. With all my concerns about my brain getting messed up, I was petrified I wasn’t in good hands. After a frantic, sleepless night, I got on the phone with my melanoma specialist oncologist, and he referred me to someone a hundred times better. I am now seeing a doctor who specializes in this type of radiation, and he comes with a team that includes a neurosurgeon, a physicist, and state of the art technology at one of the best facilities in Texas. Adios, stupid other doctor. I’ll take this guy.

So yeah, life is not all roses and sunshine. I’m afraid and I’m uncertain, but even that pain is staying in the hallway. Thanks to the care of so many people and my own testimony that God loves me, I am living in my lighted room.

The night before we got the lab results about the cancer spreading to my brain and liver, Brad asked our bishop/hometeacher to come over to give me a blessing (as Brad put it, he wasn’t in a your-will-not-mine mindset, so didn’t feel comfortable doing it himself). At the time, we were still hopeful we’d get news it was all nothing, so as Bishop B began the blessing, I did that thing where you pray really hard and plead for certain words to come. I really, really, really wanted him to say I would be healed and all would be well. 

He didn’t. 

Instead, he reminded me that the Lord created the world and knows the inner workings of my body, too. He has the power to fix this, but He also has a purpose for me that stems from his knowledge of me and my potential. In the context of a priesthood blessing, Bishop B bore witness that I am God’s daughter and He loves me. Whatever happens from here will happen because my Heavenly Father knows what it will take for me to become the woman He sees in me. And I will never be alone.

Since then, I have thought versions of these words a thousand times: God is not Santa Claus, and it's not His job to give me everything I want. God is God, and He loves me. I can trust Him. What a far-reaching blessing, and such a source of comfort. I feel that trust to my core.

So, I don’t know why I’m writing this post, except that today I kept looking around and thinking, “There is no darkness here.” 

I am a blessed, blessed woman.