Thursday, March 28, 2013

The bombshell, part 3

*You're going to want to read parts 1 and 2 before this final installment if you haven't already...otherwise you'll be quite confused! OH, and if you faint when you see blood from a paper cut, you're going to want to close your eyes when you get to the pictures.

I'm not going to pretend I always had a "glass-half-full" kind of attitude about this whole thing. It took me crying out to God like Job and David and so many others did and listening to God's words through the Bible and to wise people like my husband and my family and my friends. But when I wrote this paragraph on Facebook, nine excruciatingly long days and sleepless nights after that life-changing phone call, I meant it entirely, with my whole heart:

Surgery is scheduled for June 14, with a pre-op appointment on June 12 which also happens to be my birthday. You can continue to pray with me that the surgery will be effective and that the tumor will not even be malignant or that it has not spread throughout my body. But in all honesty, my biggest prayer is for whatever needs to happen for me to love Jesus more and bring more glory to His name. If I "beat" this but lose that focus, in the long run I will have lost.

People were so amazing to our family during the twenty days of waiting before my surgery. I got a gift certificate for a massage, had a pre-op pedicure, and had many letters, notes and immense amounts of prayer. I had a few girls nights, including one where my tumor got a name: Jezebel. Jezzy and I had some great laughs and a few tears with some wonderful friends and family. A group of girls who have done a Bible study with me for years and years threw me a little pre-birthday, pre-pre-op celebration with chocolate fondue and chocolate wine. God, thank you for my sweet friends.

June 12 was my birthday. Dan and I mapped out an entire day in downtown Portland all scheduled around my pre-op appointment. We went to Pine State Biscuits, Stumptown Coffee, spent some birthday money at Lloyd Center mall, rode the MAX to VooDoo Doughnuts and Powell's bookstore and took the street car to OHSU's tram where we got an aerial view of Portland on our way to the surgeon's office up on the hill. Instead of presents, I got a thorough check up, including that proud moment of stepping on a scale after a breakfast of carbohydrates with a side of sugar. I also got my blood pressure taken (not sure the doughnuts and coffee were the best way to keep that down either, but a happy-birthday-to-me-and-my-hypertension, thank you very much). Instead of blowing out birthday candles I got blood drawn. Then instead of listening to the Happy Birthday song, I listened to a very frank physician assistant tell me that I just needed to sign a consent form saying I knew the surgical risks (adverse reactions from anesthesia, risk of massive blood loss, temporary and/or permanent paralysis--either from the waist down or from the neck down, and the risk of stroke and finally death.)

Eating another bite of the bacon maple bar that I'd wrapped in a napkin and stuck in my purse made me feel a bit better. See? Bacon. I did have protein for breakfast. Take that, you clearly inaccurate scale.

After the appointment we went to a movie. I honestly can't remember which one, not just due to the fact that I was distracted thinking about stroking out on the OR table in 2 days, but because typically I don't ever remember any movie that I've ever seen. I'm actually mostly serious. Dan is constantly reminding me where and when and how many times I've seen a movie when I'm swearing on my life that I've never seen it before.

After the movie we headed to dinner at Mother's Bistro. It was good, but I was ready to go home, kiss my boys, and attempt to sleep. It was a good birthday. It could have really bombed. But it didn't. God thank you for my husband; the person who knew what I needed that day and made it happen for me.

June 13th was a bit of a blur. I remember trying to have the house clean because I didn't anticipate much ability and/or desire to be scrubbing toilets in the near future. Then I went to a Bible study in the evening for our women's ministry at church. Again, I don't remember a lot of it, but I do remember being encouraged and being prayed for. God thank you for my amazing church.

June 14th was not only the day my surgery was scheduled, but it was the last day of school for my boys and also Ty's kindergarten graduation. Honestly I felt pretty horrible knowing that I wouldn't be there. Both my parents and Dan's parents and sisters would be going to the ceremony but I still knew that Ty would miss our faces in the crowd. He is my sensitive one. The one who, a few days after my "diagnosis" he called me from his school classroom asking me to come pick him up because he didn't feel well. When I walked in the classroom his teacher mouthed to me "I think he's okay." He looked like he was going to cry and came up and hugged me. And then when we walked to the car he started skipping and saying, "can we go do something special?" If "special" means going to Fred Meyer to pick up a few groceries, than, YES!  Seeing that toothless grin with the dimple on his left cheek...oh sweet boy. We didn't go to Disneyland but I made sure that at least his lunch was extra special that day.

Now Jake, on the other hand...not as sensitive. When I told Ty they would probably have to shave part of my head for the surgery he looked a little upset. He told Jake in a sober voice, and Jake started laughing, "UGH, Mom, you're going to look SO ugly!" God knew I needed both a sensitive soul and one that makes me laugh. Both of them have bits of each quality but I love how different they are and how much they are constantly learning from each other.

Back to June 14. Before the boys left for school and before Dan and I headed to the hospital to check in for surgery, our parents, and the elders of our church and our pastor came over to pray with us. Holy cow. I was already feeling not my most attractive after scrubbing my whole body twice with hot pink Hibiclens (that made me smell more like a medicine cabinet than a fresh tropical breeze) and not being able to put on deodorant, lotion, makeup, hair products, or anything else that might possibly help a human being feel better about themselves. I've said before that I'm not a pretty crier, but on the morning of June 14th, I was pretty much hideous. But as much as I was a hot mess on the outside, those prayers pierced right into my heart. I felt a peace that I'd never experienced before. A peace that didn't make any sense.

Dan and I took off for the hospital where my parents would come after Ty's graduation. The boys were going to stay the day and night with Dan's parents. I never did ask what they did, but I'm sure their grandparents spoiled them rotten and made them feel as normal as possible. Have I mentioned before how much my in-laws rule?

We got to the hospital and were led to the pre-op area where I put on my "beautiful sea-foam gown," got my IV placed and waited. I watched some real life crime TV shows and tried not to look at the clock. The surgery was supposed to start at 10:30 and I didn't leave the pre-op area til more like 12:30. I kissed my husband, told the nurse anesthetist that sure, I'd be happy to take something in my IV that would help relax me. I don't remember even getting to the actual OR before I was sufficiently relaxed (or drooling like an idiot and saying who-knows-what. Thank you, Versed, for entertaining medical staff all around the nation each and every day.)

I woke up about 2 hours later as I expected, to a whole lot of nausea and just generally feeling disgusting and not really knowing what was going on. I ended up getting meds and acupuncture in my wrists to help relieve the nausea. It eventually worked and I started waking up more and was able to visit with my husband and my parents. I knew I could feel my toes and that my neck wasn't in a c-collar so I knew I wasn't paralyzed and that they probably didn't take any bone off my spine which was true. The surgeon said he took a "fist full of tumor and muscle" and that the tumor wasn't the size of a kiwi, it was more the size of a lemon. What is it with fruit and tumors? But he was confident that he got all the margins and now we'd have to wait a few days for the pathology report.

When I was finally feeling better and was awake for more than a few minutes at a time, I got really hungry. I did the typical chicken broth, crackers, and 7-up until I conned the nurse into believing I really could handle more. She ordered me a chicken Caesar salad and some peach iced tea off the patient menu, and a granola bar for later. I know you don't care about the details, but I remember it because the Caesar salad came with cherry tomatoes on the side and I tried to eat them even though I hate them and then realized how ridiculous it was that I felt like I had to eat at least a few. I just had part of my head shaved and a lemon cut out of the back of my neck and I'm worried about eating all my tomatoes so I don't appear rude or ungrateful. I remember the peach iced tea because I had a really hard time swallowing due to my dry throat and my missing neck muscles that aid in swallowing, so for each half a bite of food I had to wash it down with 10 gulps of tea. Again, you don't care, but I swear it was the best meal of my life. Besides those dumb tomatoes.
I remember my nurses being wonderful and my stay in the hospital being short. I really really wanted to go home to my family, and did so much earlier than the doctor anticipated.

These are really not that gross, but don't say I didn't warn you!

For all my fellow nurses, or anyone else who appreciates a good surgical incision and drain now and then:

You might not be able to see it, but there was a HUGE dent on the right side of the incision, right below the skull. That's where Jez was hanging out. I still have a dent there, but it's not as pronounced. Although now you can see and feel the right side of my 2nd cervical vertebrae quite nicely, just hanging out with no muscle above or below it. Especially when I bend my neck around. It's a bit gross.

My trend-setting drain. You KNOW you want one. It was important for me to color coordinate with my body fluids:

Recovery was painful but not horrible. Waiting for 6 days after the surgery to get the pathology report could have been really horrible. But I felt each and every prayer. I felt that peace again, knowing that whatever was going to happen, God was going to be right there with me.

God thank you for your truth.

When you surround yourself with the truth, it starts to seep in to your life. I've always hoped that I'd hang on to Jesus when the rubber meets the road, but you don't really know until you're there. Let me tell you, after 3 "inconclusive" biopsies, Jesus was the ONLY certain thing in our lives for 20 days until I had my surgery and then 6 more until we got the biopsy results. Here's what I wrote on Facebook on June 20 after I got the phone call from my surgeon:

Biopsy results are tumor is incredibly rare, but completely contained and most likely NOT cancer! Some research calls it "a neoplasm of uncertain malignancy" but since the surgeon got all the margins, no radiation or chemo is needed. It's called a "nodular tenosynovial giant cell tumor" and my doc says he has only seen one case like this but has NEVER even heard about it in the soft tissues of the neck. He's planning to write a paper about me and my tumor :) We do have to watch for re-occurrence in the future, but it looks like this chapter is closed for now. Praise Jesus! Our faith has been strengthened, our love for each other has grown. In ALL things I will give thanks to God who loves me and died for me, not promising that THIS life would be perfect, but that the next one would! Thank you dear friends for your prayers and love!

What did I learn through this? When trials come--and they will, that's a guarantee--we can either run from God or we can run to him. Running from him will only leave us confused and bitter. Running to him gives us clarity and peace.

He's not hiding. If we seek him, we will find him. He's not silent. He speaks to us through his people and through his Word:

"Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." Philippians 4:6-7

That peace that transcends all understanding? I know what that feels like.

Not because I thought everything was going to be okay, but because I KNEW that everything would happen according to his purpose. He brought me closer to Jesus so that I could follow his example and say with all my heart those words that song on our iPod reminded me of the day I thought my life was over, "Not my will but yours be done."

In the days and months that followed I struggled a lot with some pain in my scalp. To this day, it's better, but I still can't brush my hair like a normal person and if someone touches my head I pretty much want to punch them in the face. But when I get frustrated with it, I choose to believe the truth. My chronic pain, as stupid and irritating as it is, is a reminder of God's faithfulness to me. It's not just a reminder that things could have been a whole lot worse. It's a reminder that when things do get worse, he'll be there.

There it is. The summer of 2012. God used this experience to sharpen me, to refine me, to strengthen me. He allowed me to know him in a way I never had before. I pray I will always see him the way I saw him during those moments.

And I pray he will never let me forget how bright his light shone in my darkness.

Saturday, March 02, 2013

The bombshell, part 2

If you haven't yet read my previous post, you'll want to do that before reading this one. Unless you're one of those people who like to start reading a book smack dab in the middle of it, in which case, go for it. But don't say I didn't warn you. 

When I got home from my CT scan Dan and the boys weren't home yet. I walked around my house a bit, not sure what I was supposed to do. Then I heard the garage door open and Dan told the boys to pick a show to watch on TV because he and mom needed to talk. Holy moley did we need to talk.

I remember bursting into tears again as he walked down the hall towards me. I hugged him tight and I thanked God for the strength I already could feel through that hug. We talked and cried together. He told me he had once read an article by John Piper that he'd written after he was diagnosed with prostate cancer. Dan had gone back to that article after he talked to me on the phone and shared part of it with me as we both had tears streaming down our faces. Powerful. Read it when you have the chance.

I told him that I didn't want to say a word to anyone until after the appointment with the specialist. Then we'd have more conclusive information to share. My parents happened to be on vacation in Hawaii. I definitely did not want to ruin that for them. And I couldn't tell anyone else without telling my parents.

But Dan reminded me of the truth once again. Just because we don't tell people doesn't mean we're not going through this. Don't we want as much prayer and love and support as possible?

Oh man. But telling more people means it's more real. But that's ridiculous, of course it doesn't. It's not any less real because people don't know about it.

Do I want love and support and especially prayers? That's a heck yes. But it means some people are going to look at me with big eyes and pat my back and say stupid things. Maybe. But it also means that the people I love are going to hold me up and not let me wallow in my misery when I feel like giving up.

So I gulped and grabbed my cell phone. Dan called his parents and I texted my mom saying "Call me when you have a chance to talk." The phone rang 30 seconds later. Before answering I knew this would be one of the most difficult conversations I'd had in my life. Remember my first thought after hearing my diagnosis? I'm SO glad it's not one of my kids. Well, I'm a kid. A kid who had to give her parents news that will devastate them. Their child has cancer and might very well die before they do.

 I answered the phone and my mom sounded all cheery. I asked her if she really did have a few minutes to talk. She said, "Yep, we're just here shopping and walking around, you're not interrupting anything." And I burst into tears, but I don't think she heard me. I was remembering when I'd broken my arm in 6th grade in front of the whole school at recess. I'd been so tough and had fought back the tears, but the moment I saw my mom and her concerned face, I lost it. My mom who loves me more than life itself. Just like I love my boys.

I finally said, "Sorry, there's just something about a mom." She said, "what'd you say?" I don't think it was just a bad connection, I just think she didn't understand yet what I was about to tell her. (Though maybe it was because through my tears my sentence was completely incoherent.) Either way I had to tell her.

"WHAT? Oh Angela, WHAT? Randy, come here, Randy." And then she put me on speaker phone and half of Maui probably thought we were all nuts. I don't remember a lot of that conversation either, but I do remember my dad being heartbroken and still having his unshakable perspective. His blog that he wrote shortly after that was not for show. It was for real. Not because he's so amazing (though I think he is) but because the God he has followed so closely for so many years is so amazing.

My mom doesn't blog so much--or ever--but her firm foundation proved to be such a deep encouragement to me as well. Wow, I love my parents. As they cried with me they were still able to speak truth into my life.

God is good even when we don't understand.

I asked them to call my sister because I was just spent. I think Dan made some other calls, but I was ready to curl up in a ball and sleep for a year. But I couldn't because my shoulder still hurt so bad.

Stupid shoulder. Stupid cancer.

But even if I could have slept I still had another conversation I needed to have. Dan and I decided to tell our boys (ages 6 and 7 1/2) exactly what was going on. They could tell something was wrong, and I think it would have been cruel of us to not tell them then and end up having to lay a bombshell down later. And again, just because we don't tell them doesn't mean it's not happening.

Dan did a great job trying to explain how serious this was, but that we were trusting that God was going to take care of all of us. He didn't tell them everything was going to be okay...because it easily might not have been. He told them I could even die because of this.

The boys had mixed reactions. Jake tried to keep things upbeat by saying, "well, that's okay Dad, because I think we'd still be okay just the 3 of us boys, don't you think?" And I had to laugh because I know he was just trying to stop me from crying. And Ty didn't say anything but he came and snuggled with me later on the couch. The next morning he came into the family room where I had been sleeping on the recliner for the last week due to my shoulder pain. "Mom?" Yeah buddy? "Do you still have cancer today?" Knife in the heart. Yep, I do, sorry honey.

Dan had an elders retreat for our church that very next morning, and I think that was completely God's perfect timing. I was still at home waiting for the call from the doctor about the results from my CT, and whether the cancer had spread to my bones. Dan had called me and told me Vergil, our pastor, wanted him to share at church on Sunday. So much for not telling anyone! But I knew it would turn out to be a great decision to not keep things to ourselves. Indeed it was.

Since it was going to come out by Sunday at church, I needed to tell a few of my closest friends first. I called my friend Natalie who has NO idea what a humongous blessing she was to me. She let me cry and made me laugh (after getting permission..."Is it too early for a cancer joke?") Exactly what I needed. She called a few of my other best girlfriends. And I sat down to write an email. Here's what it said:

Hey friends :) I wish I could pick up the phone and call each of you individually, but honestly I just can't!

I would like to ask you for your prayers for me and for our family. Most of you know that I've been having some severe left shoulder pain. A neck MRI and a shoulder MRI was ordered. I got a call yesterday from my doctor that said the results of my neck MRI "are very concerning". It looks like I have a mass at the base of my skull that is almost certainly cancer.

The hardest part is that I don't know at all what to expect at this point. My doctor referred me to an ENT cancer specialist up at OHSU, and I'm his first appointment after the holiday on Tuesday morning at 8:15. He will be able to tell me what the treatment plan is and then I'll know more. He had me get a CT scan yesterday afternoon to see if the tumor was just involved in the soft tissue of my neck or if it went into the bone, and unfortunately the results are not back yet.

On the one hand, this could just be a tumor he can remove with surgery and that will be it and I'll be fine after a quick surgical recovery, or if it is cancer that is involved in my bones that will get more tricky. I just won't know until Tuesday, or possibly even after surgery what my life is going to look like for the next few weeks and months.

One thing I do know is that God is good and He is in control. Another thing I know is that my husband is amazing and regardless of the outcome we're trusting that God will do something awesome through this! Thank you for your prayers and I promise to keep you updated.

Sorry this bombshell had to come in an email, I wish I could have sat in each of your living rooms to tell you in person. Love you all :)


At around 2pm is when I got the call, almost exactly 24 hours after my scan. I think I can confidently say that was the most surreal 24 hours I have ever experienced. NO bone involvement. Praise Jesus! I still had no idea what to expect, but at least this news couldn't be better. I called Dan at the elders retreat to let him know. I came to the meeting later that day and our pastor and his wife, and all the elders and wives prayed for me. Holy smokes was that encouraging!

And then there was Sunday. Honestly I was dreading it. It's nice to be recognized...for things you've done well, but not because you have cancer. I thought it was going to be more nods and pats and big sad eyes looking at me with pity. Not helpful. But when I got to church a few people I had told came up to me to tell me that they loved me and they were praying. That was helpful.

I walked in late so I didn't have to talk to anyone who didn't yet know and pretend everything was okay. I was dreading the fact that when Dan got up to share I'd be sitting by myself. (Vergil had told him that he could take as much time as he wanted, and in fact to just take over the sermon that day.) But then my sister-in-law Becca and my pastor's wife extraordinaire, also one of my best friends, Kelsey sat right next to me on either side. That was definitely helpful.

 During the "fellowship time" when there's a 10 minute break before the sermon where you can take your kids to Sunday school classes, I was agonizing over having to talk to anyone who hadn't heard. I didn't want to be fake. "Hi, how are you!" Good thanks, except I was just diagnosed with cancer over the weekend, so that's kind of a bummer. Yeah, if that's not a conversation killer...

But instead I didn't even need to get up. I just sat there and a group of my friends who I had sent the email to came up and sat around me. One friend handed me her precious foster baby to hold, just a few weeks old. The warmth of his sweet little body matched the warmth in my heart looking around at my beautiful friends who just wanted to show me that they loved me.

That was helpful indeed.

And then my husband got up in front of the church and made me so proud I thought I would burst. I love that man so very much. You can listen to his message here on our church website looking under the date 5/27/12. The mixture of emotion and truth in his words was powerful, to me and to our church. He quoted from Piper's article. Don't waste your cancer. Don't waste ANY hard time in your life. Learn from it. Grow not only in spite of it, but because of it. God has a specific plan for each of us in every single trial we face.


We drove up to OHSU two days later and it still felt like I was walking through a fog. This doctor was about to tell me what my life would look like for the next few weeks, months, and years...if I even had years. I remember feeling so helpless. Being in the medical field, having connections? None of that mattered. "Knowing a guy" who could pull strings for me wouldn't take away the fact that I had a giant tumor growing in the back of my neck. There wasn't anything to do but wait. 

I still can't believe that I thought this doctor would bring complete clarity to this chaos. Although I did instantly like him for his perfect mixture of kindness, humor and obvious expertise. He was the head of the ENT department at one of the most prestigious hospitals in the Northwest, and people drove for hours and even flew from all over the country to see him. Thank you Jesus that his office is 40 minutes from my house. But his expertise actually confused me even more. And what a wonderful confusion it was...there was a chance this tumor wasn't even cancer! He said he definitely understood why a radiologist thought it was cancer, and that it still could easily be, but that there were a few other possibilities. He said words like nuchal fibroma and fibromatosis, both of which you can look up if you're super curious. Gotta love wikipedia.
I have to be totally honest here and say that as relieved as I felt that I had a fighting chance, part of me felt guilty. We could have just spent our whole weekend making a "big deal" out of something that wasn't a big deal. I second guessed ever telling anyone that I was diagnosed with cancer. It might not be cancer. I was making everyone worry for no reason. I was making a mountain out of a mole hill. And I hate it when people are overly dramatic. Now all those people who really do have cancer might look at me and shake their heads because I was terrified for a few days but really never had to go through it. 

But with all these mixed emotions I kept reminding myself that I still didn't know what was going to happen, and that regardless of the outcome, this whole experience had already rocked my world. Even if it was the worst case scenario, there would always be a story more tragic than my own. No one has the monopoly on suffering. Maybe I won't have to suffer at all, or only just a little bit. But minimizing my fear or the impact this would have on my life would only minimize the story God was writing for me.

God doesn't write insignificant stories.

And cancer or not, this tumor had to be surgically removed, and the doctor said that it was in a very tricky spot. He said the tumor was about the size of a kiwi (turned out it was bigger) and it was located directly below my skull on the right side of my neck. They had thought it was on and possibly wrapped around the spine before the CT, which praise God it was not, but it was still right next to the spine and frighteningly close to the brainstem. Cancer was still a high probability and even if the biopsy showed that the tumor was benign, that was still quite a scary place to do surgery. He said he would want to have a neurologist scrubbed in and ready to help if necessary.
I had 3 needle biopsies done in the office that day and the initial results were inconclusive, so he had told me he would call me in a few days to let me know if they were able to find out for sure what it is after further testing. If they weren't able to get enough cells from the needle biopsy they would need to do an incisional biopsy which has to be done in the OR. He had said he would not remove the tumor until he knew exactly what he was dealing with. If it was cancer, he'd have to try to remove all the margins around it, making the surgery even more dangerous.
The next few days were insanely long. But this is what I wrote in a Facebook update on Thursday May 31:
I wish I would have known that all I needed to do was get in the shower and my doctor would call :) I would have done it much sooner! With a towel thrown around me, still dripping, I heard the frustrating news that my needle biopsy was still inconclusive after further testing. However, I did get the great news that my doctor is willing to just go ahead and do the surgery and take this thing out. He gave me the option of doing the surgical biopsy to find out for sure, or just have him do it and be aggressive with the amount of muscle he takes out with the tumor. I told him to go for it, take as much as he needs. I'm generous like that.
He told me that he would probably have to take some of the muscle (the trapezius for those of you who like details) regardless of if the tumor was benign or malignant, but that if he didn't take enough of it to get all the margins of the potential malignancy, he would have to go in and do it again and it would be much more complicated. He said regardless of how much muscle he has to end up taking out, he doesn't think I will have any long term problems or spinal instability.
He spoke with a neurologist who looked at all my imaging studies and said he's fairly confident that my doctor won't need to get too close to the spine, but that he would be standing by if necessary, and could do a cervical laminectomy on C-1 if needed in order to get more of the tissue surrounding the tumor. You can look that up, too.
So I have to call tomorrow morning to his surgery scheduler and get it on the calendar. He said it could be next week, but for sure by the following week. The surgery itself should take between 3-4 hours and I will have to stay overnight, but that it will probably only be a 2 week recovery time. Once the tumor is removed it could be within 24 hours that they are able to tell what it is, or if it is malignant it could be up to 5 days before they know the type and grade of the cancer. Then he would present my case to an oncology board and they would give him all the options for further treatment.
And so the waiting continues. We don't know, but God sure does, and that makes me realize I'm exactly where He wants me to be! When it comes down to it, regardless of any kind of diagnosis, no one really knows how long we have on this earth. I've truly been grateful (really!) for the perspective this has given me. What really matters? What has my life been about, and what do I WANT it to be about? This has been life-changing already and I don't even know what it is! My friend Kelsey said she'll never look at a kiwi the same way again. I concur.
At least the surgery will be scheduled as of tomorrow and we can have a better idea of when some questions might be answered. I can't even begin to tell you how much your prayers and love and support has meant to us. God is good! THANK YOU!!
And by the way, my shoulder is SO much better, almost completely back to normal! Those prayers...amazing!
I might actually finish this story on the next installment. I take it back, this is probably one of the stories in my life that will NEVER be completely finished. This chapter is bolded and highlighted in the book that is my life. And God has continued to reference this chapter many many times in the ones that have followed.
I pray that will always be the case.