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.

The Bear

This past spring, my mother-in-law recommended I listen to The Book of Polly by Kathy Hepinstall. It was delightful, and throughout most of June I dawdled many extra minutes in my car listening to the narrator tell the story of Willow and her mother Polly, a seventy-ish Texas woman with spit and vinegar to spare. Polly has plenty of quirks, one of which is her refusal to say the word "cancer." She simply substitutes the word "bear"--breast bear, bone bear, blood bear, or in the case of poor uncle so-and-so, heinder bear (my personal favorite).

At the time, I thought it was funny. I still do. But now, I can see where Polly is coming from.

Not long after finishing The Book of Polly, I had an MRI on my left shoulder in preparation for surgery to fix a fraying tendon. That MRI showed an enlarged lymph node under my arm, which my orthopedist said was probably nothing, but I should get checked out. So I took the results to my primary care doctor, and because we were only days away from leaving for a month in Utah, we decided I should get it looked at there rather than wait until I returned to Texas in August. My father-in-law hooked me up with one of his doctor colleagues, and in the middle of July, I had a needle biopsy on the node. It came back "irregular", but there wasn't enough tissue to determine exactly what type of irregular we were dealing with. The node needed to be removed in order to learn more.

The day we returned to Texas, I called my doctor here and took the images and records of that biopsy straight to his office. They referred me to a oncologist breast surgeon, as they were concerned the node was so near a cluster of nerves and wanted to be sure the surgeon had plenty of experience in that area. Dr. Seda was awesome and explained that lymph nodes tend to collect cancers from other places, so she ordered a breast MRI and a PET scan to see if there was evidence of cancer in my lungs, breast, thyroid, or the skin on my arm--all places that would feed into this weird node. Both scans came back negative. A huge relief in the Bitner household.

But the node was still there, and it was still "irregular," so at the beginning of September, I had surgery to have it removed. Four days later, we got the crushing news. The cancer is melanoma, and since the only melanoma I've had is from my right foot eleven years ago, it is metastatic--it has spread.

I have since learned that melanoma is a nasty, crafty cancer. The little spot removed from my foot was less than a millimeter thick--and tests at the time showed it was not in my lymph nodes--but it was deep enough to find its way into my blood stream. It has been lurking about my insides all these years, swimming around and looking for someplace to land. Unfortunately, it has now landed. Not only is it in the lymph node under my arm, it is also in my brain and liver.

It sucks.

In the last three weeks, there have been lots of tears--LOTS of tears--lots of doctor visits, and lots and lots of prayers and love directed at our family. We made the rookie mistake of googling metastatic melanoma, which sent us into a tailspin (on the advice of Brad's friend and former boss whose husband fought a fourteen-year cancer battle, we now have a no googling pact). Thankfully, so many people were right there with hugs and tears and flowers and notes that we were able to move past that initial misery after only a couple of days. It is unbelievable how much prayer and expressions of love work. I have physically felt myself spiritually lifted--it's unlike anything else I've ever experienced. Love is powerful, y'all. That's all I can say.

We are now on the brink of beginning treatment. The plan is to start with radiation on the brain lesions. We'll do stereotactic radiosurgery (I think that's how it's spelled--remember, no googling), which is a very precise technique that targets the individual spots with a super-powered ray rather than radiating the whole brain in a series of lower doses. It scares me, but sounds like the best idea. After that, we'll attack the liver lesions systemically with immunotherapy. The doctors are still gathering data to figure out what will work best there. It's also possible I'll do radiation on the site of the lymph node, just to zap that all clean, but for now, fighting the brain and liver bears are our top priority.

I don't know what the next several weeks will hold, but Brad and I feel a lot of hope. We have a sense of deep confidence in the plan the doctors have proposed, which I believe is spurred on by the Holy Ghost answering prayers. My biggest concern is for my children. The night we told them about the cancer was easily the worst night of my life. No mother should have to watch her children's hearts break right before her eyes, especially if--even inadvertently--she is the cause. I wish I could erase those minutes from my heart.

You're reading this, so I'll assume you care about our little family. If you're the praying type, please include Brad and my kids in your prayers. They need to know they are loved by more than just me. And if you care to pray for me, please ask that I can sleep--my worries and a medication I'm taking to keep the swelling down in my brain are keeping me awake at night. Alone in the dark with my thoughts for hours is not a good place, and I would love some rest.

Mostly, though, thank you for caring enough to read through all this. I can't repeat it enough--prayers work. And simple, sincere kindness somehow obliterates the darkest fears.

Love is powerful, y'all.

Today was the last time I will watch one of my children in the Primary program. Thank you, Lukie, for keeping me young as long as you could.

While on the other end of the spectrum...

Pepper was ordained an elder in preparation for his upcoming service mission with the LDS Welfare system. Man, I love these two!

It's a bit ridiculous how much I love watching this little guy play baseball. Thank heaven they have both Fall and Spring leagues around here. I couldn't wait a whole year in between.

This weekend, Brad, Pepper, and Adam drove down to Houston to help LDS Helping Hands with the hurricane cleanup. They came back exhausted and smelly, but feeling good.

So, apparently this is who I am now.