Glimpses of normal and not so normal.

I've been wearing my hair in a ponytail since January. Luckily enough, post surgery and through treatments my long hair could be maneuvered in such a way that I could cover the bald right side of my head. My own personal combover.

I had one  hair appointment before radiation at a salon. It was great, but also complimentary. (Commonly known as a cancer perk). The stylists normal price was $150 for a cut, $200 for color. So, needless to say I didn't go back!

My head has healed a lot from the surgical scar and there are awkward but beautiful bits of hair growing back in. I saw a great deal on a groupon for cut and color so I decided to take a chance.

Amazingly, the gentleman just had a brain tumor patient last week! He was kind, careful and attentive. He had to cut a lot of hair off because it was split and super dry from treatment. He cut it so that I can keep it down or put it up. He gave me some wild hairspray that's doesn't wear off all day. I was so happy when he was finished. 

I drove home looking again and again in the mirror, surprised to see my hair again. The haircut day was a special day, but most other days are plain and ordinary. 

On a different more ordinary day I was sitting at the dining room table and I got a side glance at my head in the mirror and I was quiet for a moment. I could see the scars and the still bald sections and it caused me to pause and even wince.

  

I do want to remember both the good and the bad and let it shape me and mold me into a person who seeks out God's strength in all times, because life is not only made up of Facebook photos and cheery days, but it's hard and sometimes  it's easier to hide. I also want to remember this journey to look back upon later to remind myself what I have been through. 

In a devotion I read last week, the author spoke about messy piles and how she hides her junk when people are coming over, the author said "there is comfort in hiding the messy sides of our life, it gives us a few seconds of pretending that life is ordered and perfect. Her poignant words-- there is comfort in hiding, but not peace." So today I celebrate letting my hair down, in more ways than one!

Regionals

Noah has been thoroughly enjoying his rock climbing team since he started in September. He has had a few competitions but we kept it very lighthearted and didn't even tell him his scores or rank.  He didn't ask and didn't seem interested so we figured that we would keep it fun for him.  There is plenty of time later in life for ranking and competition.

After two competitions, he had a good handle on the process. Mid season, the kids have a regional competition to decide who moves on. The competition is very serious. The kids arrive two hours early and are sent to a holding room. They have timed beginnings and can not see anything in the gym until their time. When they come out of the room they can only look forward at the crowd and not back at the walls. They have 4 minutes to climb the wall, having never seen it before. They are given points based on whether they slip, touch an improper hold, whether they get to the top and how far they make it. When the timer goes off everyone has to get off. The kids move to the next wall with their backs turned. Noah did well on the first two walls. On the third wall (out of 6), Noah struggled and got very frustrated. He immediately wanted to leave the competition and give up. It was so heart wrenching for me and I felt like I was going to throw up from my nervousness, I wanted him to succeed and feel proud.  

He moved on to the fourth wall which was even harder. He just kept falling out of anger and frustration. We weren't allowed to talk to him at all.

As he moved on to number five we all watched with surprise. This wall was almost completely horizontal and on a reverse incline with very few holds. All the kids were falling off but Noah couldn't see them because he couldn't look at the wall. He was just assuming he was the only one struggling. 

One of his good friends was cheering him on so fiercely and she started to tear up when she saw his frustration. She wanted to go and boost his spirits. 

As the competition ended we were really worried about him and then his coaches and friends rallied around him. Finally he could see the other climbers falling. 

The girls climbed next and he could cheer them on. He was so passionate and encouraging. 

Rock pclimbing is mostly a solitary sport,  but it was so clear that training together 3-4 days a week bonded the kids. This made me so happy. 

When we left we all went for ice cream and told him how proud we were that he didn't give up. 

I know it won't be the first time but it was so painful not to be able to help him. I know he had the strength and the ability to climb the walls but mentally he wasn't prepared to fail. 

We've been talking a lot about our inner voice and how sometimes we let the voice of defeat speak louder than other voices. Later that evening he came to me and said he realized he wasn't listening to the "can" voice. 

We talked a lot about digging deep when it feels like there is nothing left and we smiled and laughed about the day. 

I'm sure some day my kids will tell me to stop talking them to death, but for now they seem to enjoy our times of introspection. 

I'm sure we have many more competitions, more success and more failures ahead and I'm grateful for this stepping stone for Noah. 

Onward

I had my appointment last week. Of course I was nervous, especially when the tech said she needed a few additional scans. I met with my doctor afterward. He said the scans look clear and my blood levels are back at 100 which is great news. 

I asked him if the course was to continue with treatment or to stop. He didn't hesitate and said we keep going. They don't have studies for my diagnosis, but grade 4 tumor patients who complete 12 months have better results. If the treatment gets too hard I can request to stop. 

So here I am at the beginning of round 6. Half way. It seems daunting and I will have some huge bash when I'm finished round 12. 

All of this is balanced wonderfully by the fact that I continue to feel great and I feel like my life is full of normalcy and ordinary days. What a gift!!

It sounds cheesy but when I heard we were moving forward all I could think about was my friend Erin and I singing Onward Christian Soldiers from the old E and R hymnal at St. John's. We used to stand in our pew and march when we sang it. Though that really isn't one of my favorite songs anymore, I hold on to the smiles and giggles we had fully enjoying the song. We surely weren't aware of the great battles that were ahead for either of us, but every time I hear the word onward I am returned to a place of joy, ready to march on. 

So here's to a fabulous Christmas full of new life and great joy!

To see the big picture

It's been a long while since I posted. I have my next MRI and appointment on Wednesday at 1:30pm. I'm not looking forward to this round of chemo because the last one was incredibly hard. As the medicine builds up, the symptoms worsen. I remember the first month thinking it was cake. Last month I didn't leave the bed hardly at all and I was sick for the first time, which isn't so bad. 

The great news is that once I recovered, the rest of the month was full of energy and normalcy. I have felt fantastic. I traveled to PA for Thanksgiving without any fatigue or exhaustion. 

I have been feeling quite a bit of dizziness  which one doctor said may be a sign of damage to the ear from radiation. 

I have no new news about my blood counts and I will find out more about that on Wednesday, as well as the plan for the next six months.  

As I wrote my Christmas cards out, I was led by the word provision. I have felt very aware of all of the ways God has provided the support I need to get through this. 

I remember in the beginning during radiation, I was disappointed that I wasn't one of those cancer patients that was running a marathon. I have always had unreasonable expectations for myself and this was no exception. But even in the midst of that disappointment, God provided a group of my friends here in Seattle to encourage me to be part of a kettle bell class. Twice a week we meet with a trainer to lift and strengthen. I realized two weeks ago that perhaps I shouldn't be disappointed in myself and that this is quite an accomplishment even without cancer. (I would still like to run a marathon). In addition to the class itself, I have regular time with an amazing group of women which is so good for me. 

After all of this pondering my devotion this morning was about provision. It shared that the word provision means to see and that God's provision is based on God's ability to see the big picture, that of course we can't see. I felt connected and inspired through this message. 

Even as things are going well for me, my heart is heavier than before. My friend Bill, my brain cancer buddy, had some unusual signs in his last MRI and they are moving up his next one. 

A former parishioner of mine, Pete, who is a dear friend and even read scripture in my wedding with his wife, was taken to the hospital in November with a mass on his brain. He was operated on last month and then had complications from the surgery. He is at Hopkins recovering and he has a long road ahead. 

And lastly I found out last week that one if my youth group students from Oxford also has just been diagnosed with a tumor and awaits his path results following surgery. He is about 16. 

It seems impossible that all of this is happening and it brings me to a place of empathy and humility every time I think about it. 

Somehow in the midst of all of it, I do believe firmly that God does provide.  I believe God sees what we do not see and comes alongside us in the midst of these struggles and places perfect people in our path to be ministers, in all forms. In a world of increasing isolation, I am reminded daily how interconnected Gods family is and I am ever so grateful.

And so, as always I covet your prayers this week as I lay wide awake in bed wondering what Wednesday will bring, but I also hope that you will cast your net a little wider to include these other warriors, their families and friends, and also those around you who need you to come alongside them and encourage them to see God's provision.