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.


Marla Taviano said...

Oh, girl. This is hitting me hard. Love you much much much.

Carol Noren Johnson said...

So glad you are blogging this story. Followed some of it on Facebook and of course in my prayers and on Randy's blog.

We are going through a trial with my husband's Alzheimer's which was diagnosed four years ago and I blog about that also, although hubby doesn't know it. The LORD is so good to us and I enjoy my husband's prayers where he doesn't remember the day, but almost expect the LORD to fill in the details in his grateful prayers. In all these trials I am grateful that this life is not all because heaven is a sure reality for believers.

Hugs and prayers,

Randy Alcorn said...

Another powerful and beautifully told story. Thank you for sharing your heart. Makes a dad very proud and thankful.