Q & A

I’ve been meaning to dust this old thing off for a while, and even more so wanting to switch the whole thing over to Word Press like the rest of the world, but until I get 10 free hours and 50 other things done first, here we are.

So a few months ago, my doc notified me of some funk in my lungs that he wasn’t sure was cancer.  So we kept an eye on it.  Eventually we decided we were tired of keeping an eye on it, and we thought we would crack me open and scoop that sucker out.

Lung surgery is about as icky and painful as you might imagine.  They put a camera down my throat and into my bronchial tubes and injected dye into the tumor.  Then they went in through my ribs on the left side and back.  They performed a lung resection, removing a portion around the mass and sewing it back together.  I woke up with a chest tube sucking blood and gunk out, snaking across the floor to a little plastic suitcase I had to carry with me to the bathroom.  I took one look at that thing and said “Leave the catheter in so I don’t have to go anywhere.  And can I have more pain medication, please?”

I left the hospital in a few days, stayed home recovering, staring at my cat and working from home.  Then I got a colonoscopy because, why not?  🙂  Three days later I headed to LA for a work trip and some fun catching up with friends who insist on living way out there.

I got home late last night and headed straight to the doc today to find out that the funk was, in fact, cancer.  Sigh.  This is my THIRD time having cancer.  Sometimes I honestly cannot believe this is my life.  On one hand, I can’t believe it’s my life because I’m 38 and super active and eat pretty healthy and I have cancer.  And not one of those “good” cancers that just needs to be treated and probably won’t come back.  One that keeps coming back and attacking different organs.  And on the other hand, I can’t believe it’s my life because I have persistent stage 4 cancer that keeps trying to kill me, and yet I just ran my fastest two miles of my life 2 weeks ago, had major surgery, got on a plane 13 days later, and the same day was swinging around my friend’s loft apartment on aerial silks like an acrobat.  An enthusiastic but mostly unsuccessful, hysterically laughing acrobat.

I stayed out until 1am in Hollywood at the coolest jazz club I’ve ever been to, and managed to get up the next day and make it through a full day of meetings that I actually fully enjoyed.

I’m three and a half years into this cancer experience.  (I will refrain from using the word “journey” because even though it totally makes sense and often it seems like the only apt word, I just really hate it.  You can totally use it if you want.  In fact, if you want to send me a card, good luck finding one that doesn’t have the word “journey” in it.)  Anyway 3+ years in and the third round is on.  Treatment for now is “watch and wait” but chemo may be in the future.  My goal is to get through the Spring and Summer without needing treatment and then, come September, if it’s back to the chemo bar, then back to the chemo bar we shall go.

People ask me the same few questions, so I will post them and the answers here for you:

Are you ok?  Yup.  I am.  I’m not thrilled.  I would plan things out differently if it were up to me, but that is God’s job.  Most of the amazing stuff in the Bible I would not have been able to plan out, so I leave that to Him.  I am not always happy.  I am not always filled to the brim with joy.  But I am definitely ok.  And even when I’m not, good, familiar company, delicious healthy food, a song I love, a trip to the beach or maybe a nice Malbec or Sauvignon Blanc cheer me right up.

Are you scared?  Generally, no.  Sometimes I get scared about a specific thing, like an aspect of surgery, recovery or a chemo side effect, but between prayer and bugging my nurse friends, I usually get over that stuff quickly.  As far as being scared to die, I want to live as long as I possibly can.  And I feel hopeful that it might be quite a long while.  But heaven awaits. Then the real adventure begins, I am very convinced.

Are you mad?  Nope.  Occasionally, I am mad if I have to miss something I want to do, but I have been fortunate to minimize that. I get upset if I feel like I’m letting everyone down because I can’t do as much as I am used to being able to do.  I get frustrated when I can’t be as productive as I would like to be.  I think you are only mad about this kind of thing if you somehow think that you don’t “deserve” what is happening to you.  I do not believe that challenging circumstances are punishment, and therefore the whole “deserve” it idea is very foreign to me.  No one deserves it, and yet we all do.  And, also…there is SIGNIFICANT growth and maturity and strength that comes only from suffering.  I basically don’t put a whole lot of weight to the words of those who have not truly suffered.  It’s the only way to show what you’re made of.  And it makes you tough as hell if you let it.  I don’t choose my suffering but the results of it, when faced with the proper attitude are a blessing you can’t get another way.

Do you need anything?  There is not anything specific that I need right now.  But occasionally, I let my friend, Kait, know if there is anything that would be helpful.  If you know me, you almost definitely know Kait.  🙂  For example, sometimes lending me a book is very welcome.   (I’m all set with books right now, fortunately, thanks to a few thoughtful friends.)  🙂

What is the hardest part?  Not knowing if or when it will hit again.  I struggle with long term planning.  Like…you should plan a vacation a year ahead.  That is stressful to me.  That’s when I know I’m in a different life than most people.  You don’t not plan a trip to Fiji because you MIGHT get hit by a bus.  But I honestly would not plan an expensive trip six months out.  More like…can we go next month?  Great, I’m in.  Long range planning makes me nervous.  The other hard part is people I love worrying about me.  This worrying business is endless.  They worry about me, so I worry that they’re worrying, then they feel bad that they’re making me worry.  Everyone stop worrying, ok?!  Just pray and trust God.  Seriously.
How do you do it?  I don’t know.  Focus on what’s right in front of me.  Appreciate each day.  Refuse to miss out on something amazing.  Buy every shade of red lipstick ever invented.  Basically I choose to throw myself into all that I do, reject fear, love as hard as I can and embrace the adventure. So, who’s with me?

Two dragons

I had a CT scan on Friday.  We had a really busy and fun weekend, during which I ran my best 5K race ever.  I’ve never run a 5K in less than 40 minutes, and my time was 38:41 with a 12:27 pace.  I know it isn’t fast, compared to most runners, but, honestly, I was thrilled.  My follow-up doc appointment was scheduled for Monday.  I didn’t have any anxiety (or scanxiety as we cancer fighters call it) all weekend, but for some reason, an hour before the visit, I started worrying and couldn’t stop.  When we got there, I noticed that they called every person back before me, even if they had arrived after.  I started pacing, near stroke-level panic, realizing they might be putting me as Dr. Mehta’s last appointment.  This could all be a total coincidence, but there was something I was sensing that turned out to not be totally unfounded.

Being a cancer patient does all of these strange things to you, and one of them is it creates this extreme, urgent desire to read people.  You read everyone from the receptionist to the lady who takes your vitals to the nurses, and most definitely the doctor.  I wonder how, when they teach about bedside manner in medical school, how they handle this.  Do they tell the prospective doctors that patients waiting to hear news will be filled to the brim with anxiety and reading every facial expression, every word, interpreting every delay, every bit of data.  She looked at me sympathetically – something is wrong!  He frowned at my results – I’m dying, like, tomorrow.  I even read the “system.”  They didn’t email my blood work – I definitely have diabetes, leukemia, high cholesterol and zero white blood cells.  Often my interpretations end up being wrong – at times, what I thought was a sure sign pointing toward bad news was nothing more than a computer glitch.  But not this time.

He gave us the good news first.  Liver looks great.  Abdomen looks fine.  Tumor markers are very low.  But in my lungs, a previously unchanging nodule (a normal thing that lots of people have) changed.  In 6 months, it seems to have grown from 4mm to 7mm.  My doctor said he really doesn’t think it is cancer, but because of my history we have to be sure.  He said he could send me for biopsy but that it really is so tiny, it would be tough to get a piece of it and a lung biopsy is no picnic.  He mentioned a chest tube and I started getting tunnel vision and feeling light headed.  Now, don’t get me wrong – I will do whatever has to be done.  What. Ever. Has. To. Be. Done.  I promised myself I would never shy away from a procedure or treatment no matter how much it would hurt or scare me.  Frankly, I’m not scared of anything like this.  I won’t like it.  I might even hate it.  But I do what it takes.  I’m not going to get sicker because of a lack of courage.  Now…given the honest recommendation of my oncologist to wait, I’ll take it.  We’re waiting to see if it grows.  If it doesn’t in two months, we’ll check again in another two.  If it grows, we’ll do the horrible sounding biopsy.  If it’s cancer, we’ll “scoop it out” (ugh) and proceed with chemo, I assume.  After all of this, he said he thinks it’s 98% not cancer.  That surprised me.  I thought we were talking 50/50.

So how am I doing?  Not great.  Not bad.  I have truly, truly been through the emotional wringer with all of this – it has this ripple effect that touches everything else in your life.  I have experienced such highs and lows through it all – I’ve felt more alive than ever in my whole life, and I’ve also felt like death doesn’t sound so bad.  I’ve felt so fully loved, so much hope, so much gratitude, and also disappointment, anger and sadness.  I’ve been shocked both by unexpected kindness and unexpected failures.  Cancer amplifies life.  Takes you soaring one day and plummeting to the ground the next.  I’m kinda beat up, honestly.

But I think the “beat up” that I feel is more the hangover that I’m experiencing from that 45 minutes in the waiting room and exam room where I knew something was wrong, and got the “bad news” vibe before I actually heard what this news was.  I suppose there is something chemical in the brain that happens – adrenaline, cortisol, something that just floods everything.  The news honestly isn’t dire at all.  As my mentor said “2%?  There’s at least a 5% chance there is something worse in my body I don’t even know about.”  That really helped me gain a little perspective, actually.  But my brain thought it was dire for 45 minutes, and it’s still there, in that “oh shit” space, even though the data says otherwise.

I dug out a Tim Keller sermon this morning, because I know I have to think my way out of this one and the best way to do that is to listen to people smarter than I am.  It was a good reminder of what I know to be true in terms of God’s goodness, His sovereignty, His purposefulness.  It also reminded me of my own responsibility in my emotional life.  There is this little fable or whatever I’ve read once or twice about there being two wolves that live inside you (I think of mine as dragons) and one is anger/frustration/unhappiness/bitterness and the other is joy/contentedness/peace/love.  They fight for control.  Which one wins?  The one you feed.

The bad dragon loves self-doubt, fear of failure, unforgiveness, performance-based acceptance, blame and shame.  I need to feed the good dragon with knowledge of God’s love and care, restful, energizing experiences, wholesome food, tough exercise, you tube videos of news bloopers, grace, people who are encouraging, fair, loving and consistent, healthy vulnerability, challenges I am capable of meeting, good books, pleasant company and prayer.  Help me feed the good dragon, ok?

 

Waiting, worry and Lost!

“Your scan looks beautiful,” said Dr. Tsung, my youngish, kind, tall surgeon.

It’s like letting the air out of a balloon – the pressure relieved by good news.  No new tumors.  Thank you, God.  Thank you.

I’ve been in this position so many times.  The one where you wait for a doctor to give you news that will drastically alter the trajectory of your life.  Those moments are so full and frightening and taxing and stressful.  I’ve had to wait hours, days, and even over a week for results.  By no means do I have this down, because this sort of thing is always going to be hard.  But here are some things I have learned along the way.  Perhaps it will help you the next time you face the uphill battle of waiting for important news.

First of all, you really do have to begin with what you believe.  If you believe in nothing, that’s entirely up to you, and you can move forward doing basically whatever makes you feel better.  Some things to consider: some people like being alone, and others prefer to be surrounded by a support network.  Wherever you fall on the introvert/extrovert spectrum, pay attention to your wants and needs and try to adjust your social schedule accordingly.  An introvert does not benefit from constant companionship and an extrovert will quickly become depressed if left alone for too long.  When we’re out of our element for any length of time, it stresses us and more stress is not what is needed in times of worry.  I would also recommend engaging in activities you find to be energizing or calming such as exercise or an activity you enjoy.  It’s also good to keep a normal routine – you can’t and probably shouldn’t take a few days off work and sit home and worry.  Some of my best work has been done when I’ve pushed my upcoming doc appointment out of my mind and focused on something totally unrelated.  Keep your mind occupied by work or mindless tv.  Not a bad time to binge on Lost episodes if you were living under a rock circa 2006. I’m not even joking.  Good, well written tv shows have basically gotten me through cancer.  Ok, more so God, my friends and family have gotten me through cancer, but Scandal and Revenge have helped me forget about cancer for a while.  Just turning your mind off can be helpful.  This strategy immediately gets derailed when there is a cancer story line added (assuming a cancer diagnosis is what you’re waiting to hear about.)  In which case, you can skip that episode or…just watch Lost, ok?  No cancer scares on the island from what I recall.

If you’re not sure what you believe, it’s not a bad time to think about it.  Have you wondered about heaven and hell and God and what happens when you die?  Of course you have.  But, like many people, you’re jaded by organized religion (Understandably!  Some real idiots out there in the name of various religions, eh?)  and/or you haven’t landed on anything that fully makes sense to you.  I encourage you to pick something and learn about it.  Just start seeking for spiritual meaning and ruling things out.  I can pretty much guarantee you will find yourself down a rabbit hole of interesting ideas and philosophies.  My own journey led me from kind of half heartedly hoping that reincarnation is real and that I could come back as something that flies if I behaved myself, to believing that Jesus is the real deal.  It just made sense to me, eventually, that God is perfect, we sin against Him (we do…all of us) and there needs to be a sacrifice to pay for those sins, and Jesus is that sacrifice – God’s son.  He sacrificed the most valuable thing ever, to demonstrate His love for us.  Now, because I believe that is true for all of us, not just “my truth” or “true for me”, I hope you will discover that, too.  But I sincerely think that simply taking the step of exploring whatever intrigues you will lead you closer to the truth – whatever the truth of this astonishing miracle of a universe we live in is.  Taking an honest step toward discovering what all of this is and how we got here and what we’re meant to do – it’s always a step in the right direction.  Seek and you shall find.

Now, for those who consider themselves to be Christians.  Coming from the perspective of a Christian worldview, there are certain Biblical ideas and instructions that are very helpful to one experiencing great worry.  The first is that God commands us not to worry.  Isn’t that interesting?!  I have thought about this a lot, because I find it to be such a loving instruction to us as His children.  If you are a parent and you think about your child, and you imagine your child worrying, it’s heartbreaking, right?  I remember my mom asking me what I worried about once when I was about 9 or 10 years old.  I told her, and I recall this very clearly, that I worry that the United States will go to war and my dad would have to go to fight.  I regularly worried about this.  Having been born in 1978 and having several family members who fought in wars, I heard enough references to war to know that it was very, very bad.  I often worried when I saw the news and heard about various tensions throughout the world, it being the cold war and all,  When I expressed this worry, my mom laughed and told me that my dad was too old to be sent to war.  I was immediately relieved.  I am sure if my mom could have read my mind and saw that I was harboring that worry for years, that she would have alleviated it immediately, as she did that day.

I imagine God is troubled when we worry, partly because we spend time worrying that we could be spending doing about 10,000 more productive things, but also because He loves us and doesn’t want us to live in those confusing emotions.  He also wants us to trust Him.  We might talk about God and go to church and express a belief in Him of some sort.  But do we really trust Him?  The rubber definitely meets the road with faith when you’re sitting in a doctor’s office, waiting for the doctor to come in and point you down one of two roads – one, that you really don’t want to go down.

Being through what I’ve been through – Two cancer diagnoses, multiple surgeries, two chemo protocols, dozens of side effects – I have a lot of experience in that waiting room.  And my time with God, in those moments has changed.  I used to think just “no please, no, let it not be cancer, no, please, no, let it be ok.”  While a part of me still thinks that way, there is another, emerging part of me, that is calm, willing to hear whatever the news is, willing to go down whatever path is the one God leads me down.  I am increasingly challenged to believe in God’s goodness.  I am still tempted to believe that bad news means that God is not real, or if He is real, He’s not good and He does not love me.  The deeply flawed, human side of my heart and brain turn so quickly from God when He does not act as I would have Him act.  That hurts to write that sentence because it reflects such arrogance and short sightedness.  We can believe that this being created this entire earth – He invented water, and fire and jellyfish and geysers and the Northern Lights and our incredibly intricate nervous systems.  We can believe that, but not that He’s in control, that He will facilitate our lives in a way that is ultimately for our good?  Sometimes, believing in God seems a little crazy.  And I get why people think it is.  But from a logical perspective, it’s actually crazier to kind of vaguely believe in Him but not trust Him with these difficult things.

We do this, because we’ve probably felt betrayed by God at some point.  We lost someone that we loved, usually.  That is usually the thing that pushes people to the point of refusal to believe that God could possibly be good, when such a wretched loss has occurred.  Our hearts are so beautifully designed to love and engage with others, that a loss of love – by death or abandonment – changes us, searches in a rage for someone to blame, shuts off our willingness to trust this being in the sky we call God.  But I know people who have experienced unspeakable loss – second trimester pregnancies ending suddenly, car accidents taking away fathers, cancer stealing yet another young life, blindsided by an affair and demand for divorce – and some of these people have the toughest, most serious faith I’ve ever seen.  Because they’ve been through the wringer, and they didn’t let go of God’s strong hand.

So, at some point along the way here, I decided, years ago, that I was all in, as far as God goes.  So, when I sit there, waiting, I remind myself of all the good in my life, the history of God’s faithfulness, the truth that He has brought me safe thus far, as that old hymn reminds us, and He will lead me home, as He sees fit.  This is the only way I know.  It’s not an easy way, but I believe it is the best, truest, most sensible way.  I was willing to hear bad news on Friday, when I went to see Dr. Tsung.  I was willing to hear that things were not going well.  I had high hopes, of course.  But I was willing to hear what I didn’t want to hear.  I was willing to let go of my timeline of chemo and my deep desire to “get back to my life.”  I was willing to accept that I might not be able to go ahead with plans I have for once all of this chemo is over.  I plan to run in a relay in the Pittsburgh Marathon, I am toying with the idea of doing another triathlon.  I want to go on a short missions trip.  I am planning my 10th anniversary trip.  I want to visit friends I haven’t seen in a while.  I plan to orchestrate a huge capital campaign to build new and better facilities for the organization I serve.  I want to redo the retaining wall and landscape that part of my front yard.  I wrote a book and now need to get it published.  I have plans, yo!!

But I sat in the doctor’s office and offered up my plans and hopes, while I waited.  Not my will, but yours, be done.

The nurse took my blood pressure while we waited.  I typically run at a 120/80 and in times of anxiety, more like 140/90.   My blood pressure was 100/62.  I actually laughed out loud.  I silently gave God a high five, thinking “Wow, I’ve come a long way!”  I was in awe that I was actually that calm – that it wasn’t just an act, that I honestly wasn’t being ruled by my anxiety.  It was physiological evidence to me that I was really doing it – really trusting God.

The clear scan, to me, was just the icing on the cake.  The cake (I don’t like this whole metaphor because clearly the icing is the best part of cake) was that I could actually trust that, no matter what the doctor said, God’s got me, and He’s in complete control.  Had the news been different, yes, I would have been deeply disappointed and probably a little scared.  But I know that I am able to recover from those difficult emotions, release my plans and lean into trusting God.  I pray with everything in me that I never have to fight cancer again, once we are done with these chemo treatments – they are pretty terrible.  The idea of going through all of this again just sends a chill through me.

But, whatever God sees fit for me…I’m in.