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. 

Shackles

Last week walked through the doors of the neuro-oncology unit for my regular monthly check-up. It's a very nice place with large windows and comfy chairs. I sat and waited for my appointment and I noticed a patient brought in by guards in a wheel chair. Peeking out under his blanket were orange prison clothes and his ankles were cuffed to the chair. Immediately my eyes welled up with tears. How on earth would you go through this in prison? It's hard enough with an outpouring of love from people I talk to often and a big comfy bed. I can't imagine doing this alone, in confinement. I recently finished reading Just Mercy, a fabulous book about the prison system in the US and the less than humane conditions of prisoners. My heart went out to him and I really wanted to go and talk to him but his guards stood in front of him.

When I was taken back for height and weight, he was wheeled in and the nurse asked if I preferred to step out in case I was uncomfortable. Of course I said no. It was totally fine with me.  When I went in to my room, my doctor noticed I was shaken and I told her why I was upset. She promised that they were taking good care of him. 

I believe there isn't a time in anyone's life where they can say they have never made a decision they regret. 

We are all bound by struggles and regrets. We are all prisoners to so many things, even if they aren't so visible. 

I remained jarred by this through my appointment.

As the doctor reviewed my labs she showed great concern. My platelets and white blood cells are too low to continue treatment right now. There is a normal rage, a low range and a range that is not safe to take chemo. I'm there. The doctor asked me to wait in the room for a little so she could review more information. 

That particular pause in her speech was terrifying. At every visit my concerns were calmed, as if to reassure a child after a fall that they would be fine. This was the first time in a long time that I remembered how serious this is. 

The great news is that they sent me home and delayed the chemo for almost two weeks. I went back already and had more tests done. The numbers increased enough to stick with the new start date a few weeks from now if my counts stay up. 

The things they are watching are platelets  and white blood cells. If platelets are too low, your body will struggle to clot blood and bruise easily. A cut could bleed longer from low platelets. Over the past weeks my legs have become a purple connect the dots game from low platelets. 

The white blood cells are the cells that fight infection. My doctor instructed my family and I to get flu shots right away and to keep my distance from people who are sick or germy (my word!).

Last Friday, I left the school building after dropping off Noah's Halloween costume with a broken heart. I couldn't stay for the party in a flu season room of elementary students. 

The tricky part about my medicine is that the Temodar (chemo) fights the cancer cells. However, Temodar has a slight risk of compromising bone marrow which in some cases leaves patients susceptible to leukemia. These cases are a small percentage of patients who take Temodar and highly unlikely. 

It is a tricky tightrope I am walking between health and sickness. It's incredibly hard to face the facts when I feel the best I've felt in years. I'm exercising, eating well, I've made many new friends, I love our church, I love the culture and beauty of the northwest and so it is easy to forget about what is going on in my body.  The handcuffs and the lab results and the endless appointments are all areminder to me that God sees my struggle, knows what I feel shackled to, and yet sees beauty in me. 

As grateful as I am to have maintained a relatively normal appearance and function, it is balanced by the fact that my internal feelings and struggles in this fight are virtually invisible. 

These thoughts always bring me back to my baseline. My struggle is no better or worse than yours. My outside sometimes reflects my inside, but sometimes it doesn't. The man wearing orange might be kind and caring, he might be transformed or wrongfully convicted, he might have done terrible things, but either way there is no doubt that there is more to our story than we can see by just looking. 

So, in the meantime, I'll enjoy the reprieve  from the heavy medicine. I go back for blood work frequently and I will have my next MRI on Dec. 2. It is at this next appointment that we will address whether my body needs a longer break or if we should keep going. 

As always, thank you for your love and grace and if you put the zucchini bread on my doorstep, thank you!

 

Nadia!

A few years back I read a book called Pastrix that I fell in love with. An edgy tattooed Lutheran pastor fell in love with God's message of grace and resisted the church she knew that only spoke of judgment. 

Last night she landed in Seattle on a 14 city book tour for her new book Accidental Saints. She wanted to name her book Purpose Driven Sinners but her publisher wouldn't let her. 

At First Baptist in Seattle she was welcomed by a packed church of young and old. 

She raffled tickets for $5 to win an old Christmas ornament, a DVD of a bad Christian movie, sheet music to the drummer boy, (as if there was a boy drumming in the manger) or a ham. It was really just for fun but the money raised went to support Mary's place, a Seattle city women and children's shelter.  We raised about $1900, the largest amount of any stop in her tour. 

Some of her lines from the night that I loved

--we have lost the plot if religion is the place we hide...it then becomes nothing more than spiritual candy crush. 

--too often church has become a place where we avoid and escape reality--Herod was trying to kill the innocents and we tiptoe around the murder of so many innocents in our society. 

-- institutions are often more interested in protecting their identity than living up to the vision of the institution. 

-- holy things we need are almost always the same as the ordinary things we need

-- church should be an hour a week when we don't have to pretend

-- asking can we pray honest prayers in church or just church prayers 

-- demons are only cast out through prayer 

--  the rapture is made up of bullshit (she was raised in the Church of God)

-- the manipulation of children and youth in vulnerable camp settings is a sin. 

-- Sin is the self curved in on the self, thus making ourselves our own God.

Of course she said a lot more and you may not agree with things she said but she is definitely worth a read for an honest and vulnerable view in faith. 

One older woman next to me raised her hand and said "I have lost my joy in going to church because I spend all of my time in committee meetings." Nadia answered--don't go anymore! She chastised "church" for exhausting people and families with the burden of meetings when people should be at home enjoying their families and friends. In her church there are no committees (there aren't in mine either) and she described a structure of working together and dreaming that is much more in line with faith and hope. 

It was a really energizing and fun night and made me miss ministry even more. I did feel so grateful for a thought provoking night out alone to think and process and listen. 

Round 5

According to the doctors i just finished round 5 of chemo. It seems like it has been so much longer than that, but then I remembered that I had 42 days of chemo before round 1 officially began! So even though it's been 6.5 months I can only say I'm 5 months into the year. 

Paul felt strongly each month would get harder as my body weakened. I thought it would get easier as my body got used to it. I think Paul was right. 

I moved my start date back a few days this cycle so I could help lead our church women's retreat last Saturday. It was really important to me to have that opportunity and to feel like I'm using some of my gifts in some way. I pretty much slept the week before the retreat, led, started chemo and then slept this entire last week. My naseau has increased greatly and most days last week I couldn't even look at coffee or most food. I even threw away a full pumpkin spiced latte! That gives you a sense for how bad it was!  We were more prepared this round and Paul got permission to work from home most of the week. That allowed me to rest more and he did a lot of kid errands. I'm noticing my taste buds are really off and I taste metal with most food. I hope that is temporary with the meds though some people experience a loss of taste permanently from chemo and radiation. I feel like the new seizure meds are helping and they have a component of lessening extreme responses. I was really struggling with quick movements and loud noises and it seems a little better. 

It's all just a balancing act that I don't have a handle on yet. If I try to get out, exercise and do things I like, then I spend days recovering and feeling completely wiped out. If I lay in bed I feel gross and sad. 

The theme of our women's event was Mercy Triumphs and it was focused on the book of James. We spent time in groups walking through personal trials and then moving toward giving and receiving mercy in our lives. It was such a powerful day. One of the takeaways for me was a point that I didn't remember to share! Nevertheless it made an impression on me.  It was this concept: if we look at our current trials and imagine possible long term outcomes of these trials, how would or could the outcome be different if we show up to the trial with a heart of mercy (as defined by a recognition of affliction and a desire to show kindness in difficult situations). In other words, how different could be the outcome if we depend and rely on Gods mercy in our trials versus our own accord?

As the room of 55 women buzzed with chatter I just sat in awe of how beautiful the community is that I am a part of and how blessed I am to still be learning and growing. 

It certainly helped me this week in bed to not be so hard on myself about what I can't accomplish right now, because too often my focus is on what doesn't happen instead of the goodness and grace that surrounds me. 

As always, I am so grateful for your prayers. I meet with the doctors again at the end of October to re-evaluate and check blood counts. I will have another MRI in November and then they will decide whether I keep going or not. I'm not sure what decision to even hope for so I'm just trusting the way will be made clear. 

Secret Clubs

I felt that after I became a mother my life changed in such a dramatic way... physically and emotionally, that I wanted to surround myself with other young mothers so we could process the joys and struggles together.  I could see how different my conversations were and how the experiences my body had been through changed the frame of my life.  I have often felt that way about my walk as a Christian because with some friends I can talk freely about my faith and about what God is up to, while other friends are uncomfortable in such a dialogue.

Shortly after my diagnosis last winter, I received letters from someone I don't know who heard of my story and she talked about cancer in this way, sharing that in many ways it is a club that nobody wants to be in, but nonetheless there is an understanding that is reassuring to speak with someone who really understands.

Of the many people that reached out to me, there was one woman at First Presbyterian... Becky Stalnaker who would send emails and letters of care and support.  Becky was a faithful and strong Christian who was active in many levels of the church.  She was a missionary, a Bible study leader, a delegate, an advocate, a wife, a mother and so much more.  She mailed me a gorgeous painting of First Pres that I had my eye on and a cookbook she found in her home that was hand written in Seattle.  She read my blog faithfully but apologized for not commenting because it was too hard for her.

While I was home in June I was struggling to get together with everyone who I wanted to see but I felt so compelled to make time to see Becky.  She had been battling Ovarian cancer for a few years.  I went to see her and for the first time since everything started last December I felt that someone really understood what I was going through.  She was candid with me, spoke openly about her feelings, about God, about how insanely hard this is and offered so much candid and honest wisdom that I wanted to sit with her for days.  

I received news this week that she was in hospice and I looked to Paul with sadness and said "I might never see Becky again..." I secretly hoped that for my sake she would bounce back and I could see her this winter when I am in PA again.  And then this morning I got a notice that she passed on last night.  

Today my heart hurts for a lot of reasons, mostly because I am confused about my desire to rejoice for a life so well lived, a life so focused on God and justice and service, and my sadness about this strange club that I'm in.  I'm grateful to know her and yet I know she would be so candid in agreeing that this isn't a place anyone wants to gather.  

So instead I'll bear witness to the breath of God that she was to others and I'll remember to be a stronghold for someone else who is looking for a voice of hope and truth in tough times.  

Post Month 4 Results

Yesterday I had my bimonthly MRI and appointment.  Per the doctor's words, I am stable.  There is no visible growth and they are continuing to monitor the white thick area around the tumor cavity to see if it is scar tissue or new growth.

My blood counts are iffy.  My white blood cells and platelets are now both below acceptable ranges.  The doctors are just going to continue to monitor the counts to see if they continue to drop.  If it gets too low then they will regroup and consider putting a hold on the chemotherapy.  In the meantime I just have to steer clear of germs and sickness, get a flu shot, and be careful.

The very far off risk in the blood counts is that the type of chemo I am on has,  in very rare cases, caused leukemia, so it is important to be sure that my bone marrow can handle the medicine.

Each month I've had odd episodes that seem unrelated to everything else that is going on, but after reviewing them, my doctor feels the incidents are seizure activity.  I sometimes feel numbness in extremities, feel chest tightening, shortness of breath, surges of pain in my head, etc.  The incidents are generally isolated and don't occur often, but are noticeable.  So, the doctor is changing my seizure medicine.  She also recommended an evaluation to see if I need more rehab services because my ability to handle multiple stimuli, loud noises, crowds, etc. is not good.  I'm also finally headed to an eye doctor next week to get a new prescription since my vision has changed quite a bit.

It was a good visit.  It is the news you want to hear at a visit.  But somehow, just going to the doctor and seeing the images and talking about it all is difficult anyway.  It just reminds me that I am indeed still sick, even if I don't feel that way most days.  Because my struggles manifest in fatigue, mental confusion, memory loss, and internal symptoms I spend quite a bit of time "pretending" everything is fine.  Or you can say I'm living life as normal.

We talked again about course of treatment and I will continue on the Temodar for two more months at which point I will have another MRI and then we will sit and discuss whether to keep going or not.  At 6 months it is important to see if the benefits of continuing outweigh the harm that the medicine can do to the body.  We were reminded that there are no studies comparing 6 month or 12 month course of this treatment, just doctor's preference and personal tolerance.

Thank you to the many people who reach out to me on MRI days to see how it went, who hold us all up in prayer, and who check in regularly.  It lifts my spirits and reminds me of the interconnectedness of the web of life.  I am grateful.