Tag: chemotherapy

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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.

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Holy suffering, Batman!

So, the past week? 
That sucked.  Really. 
First, we had Monday, the day of infusion.  I tend to feel great when I go to the clinic
because it’s been a while since they filled me with poison.  So I show up optimistic, energized, ready to
go.  The infusion was fine. 
For those not familiar with how the process works, I’ll give
you a quick run down.  I have a medi-port
device, named Portia, that is installed in my chest.  It is accessed by a big scary needle and
fluids can be administered through it and blood can be taken from
it.  It’s pretty nifty and saves you from
ruining your arm veins.  Upon arrival, I
am weighed, and vitals are taken.  I am
weighed each time because the volume of chemo you are given is based on your
weight.  Blood is taken and a couple of
quick tests are done while I am administered pre-meds – steroids, hydrating
fluids and anti-nausea medication.  This
takes about an hour.  Then I am hooked up
to Oxaliplatin and Vectabix, two chemo drugs that are given over several
hours.  At the end of that, I am given a
bolus (injection) of 5-FU (yes, it’s really called that) and then hooked up to
the Wonder Woman Power Pack (aka Fanny) that I wear home.  This contains more 5-FU which is pumped into me for 48 hours.        
During this time, at the cancer center, I visited with nurses I know, showed off
my latest Wonder Woman accessories, read, rested, watched funny YouTube videos.  I even did a conference call with my staff
via FaceTime.  Ah, technology.  After, Kevin and I had lunch at Panera, stopped at Old Navy to
buy some new “visiting jammies”  (it’s
important to have decent lounge-wear when people stop by often as people do
when one is ill.)  I went home, took it
easy, did a little catching up on work and felt mostly ok. 
Wobbly, but ok.  Wobbly is the
name I give to the feeling that sets in once chemo has been administered but
hasn’t yet unleashed its fury.   You feel like something is off, your brain isn’t
sharp, you feel slightly queasy and a little tired.  The next day and a half, I was mostly getting used
to lugging that fanny pack around. 
Tired, uncomfortable.  Then the
heartburn of an angry dragon set in.  This was a
new sensation – burning from my belly, literally up to my ears.  I looked it up and that’s a thing – burning all
the way up into your Eustachian tubes. 
Ugh. 
Wednesday I got unhooked from the Power Pack and was
administered more anti-nausea meds and a prescription for heavy duty heartburn
medication.  The heartburn
persisted.  I dragged myself into work on Thursday to attend our Day of Hope picnic.  Familiar faces and an event celebrating God
on the North Shore lifted my spirits even though I felt pretty low,
physically.  I felt like I was literally dragging myself around,
wondering if people could tell how I was only about 50% sure I wouldn’t vomit
right there in front of the crowd.  A
homeless man spoke to me as I passed by and said “Ma’am, you look like a
princess.”  I looked around to see if he was really talking to me, and when I confirmed that, I smiled and said to him very genuinely “Sir,
you have just made my day.” 
I came home and made dinner and the efforts of the day just wore me down.  Just as we sat down together, I got so sick I couldn’t eat it.  What a shame!  I had three bites of a delicious meal and my body just shut down.  This was very discouraging.  I went to bed and barely saw my family that day.  Emotionally, this was the hardest day.  Your little girl just wants to tell you about her day and you have no choice but to be alone in a dark room and just get through it.  Your exhausted husband has worked all day and now has to handle every aspect of the evening – clean up the kitchen, bath, math practice, lunches for the next day.  This is when sadness and “it’s not fair!” threatens to take hold of me.    
Friday, I’d agreed to attend an important meeting.  I truly relied on God to get me there,
through the meeting and home.  I was glad
I went, and so grateful to get home, put my non-visiting jammies on and just
settle into a weekend of rest. 
Unfortunately, Saturday, the heartburn upped its game.  My insides felt on fire.  Nothing touched it – believe me, I’ve tried
everything from prescription meds to kimchi (which is delicious, btw!) so save
your well intentioned “Have you tried ginger tea?” for someone who has
heartburn because they ate too much Vincent’s pizza.  This is the chemically induced destruction of
the upper portion of the digestive system. 
My doc is on the case, so we’ll hopefully figure it out, but mint leaves
and popcicles aren’t going to tame this dragon, my friends. 
Sunday, let’s just say I spent more time in the bathroom
than I did for my past two colonoscopy preps combined.  Man, I don’t know what hell was unleashed on
my tummy, but you could audibly hear it churning from across the room.  Because I’m stubborn and crazy, we decided to
go to the Science Center anyway.  I can
tell you where every bathroom on every floor is.  My apologies to anyone who was there Sunday.  We came home and I laid in agony while
watching The Devil Wears Prada.  I want
to be Meryl Streep in 30 years.  Or be
neighbors with her.  We would visit over
chai tea and talk about the most wonderful things, I just know it. 
The weekend was really miserable.  Many times I lifted my eyes heavenward and
said “A little help, here?”  No specific
answer came – just the truth that only what is needed is what comes and that
which is not needed stays away.  This is
needed.  Don’t know why.  But I don’t need to know.  To say we need to know is to say we know
better than our creator, and that just doesn’t make sense to me.  He knows. 
He has set me upon this path and is deeply aware of every
experience.  He uses all for my good.  So be it, and may I be grateful
throughout. 

Today, Monday.  I am a
new woman.  The storm has quieted.  The fire in my belly has reduced to a
smolder.  I am so thankful to be mostly
restored.  And I am grateful to be able
to say I leaned in to the Lord in search of wisdom and comfort, not away in
despondent bitterness.  As John Newton
says, (something to the effect of) if we’re going to the throne of grace where sits the King of Kings, the
Father of all creation,  in search of
comfort and relief and we aren’t getting it, we certainly aren’t going to get
it from staying away.                  
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Portia the Port

So Wednesday, I went to UPMC East hospital to get my new port installed.  To my surprise, my surgeon was the same man who valiantly performed my very difficult biopsy.  As soon as we came around the corner, he said “There she is – my lung capacity champion!”  This man is really impressed with my breath holding skills.  (Is there any way I can make money with this skill?)  Anyway, I felt confident in his ability to do the port procedure, after all we’ve been through together.  Dr. Varma is a young-ish kind of cute Indian surgeon.  I like him.  Probably because he likes me – isn’t it funny how that works?  I remember telling my mom when I was little that I liked one of my dad’s friends, and she asked me why and I said “Because he likes me.”  And she asked how I knew he liked me and I said that he smiled really big and his eyes got squinty when he saw me.  I’m pretty sure the guy was an ex-con for some non-violent crimes – Well, I guess I started early believing people deserve second chances.  Anyway, I like Dr. Varma. 

Along with him came a big, bearded, shaved headed, tattooed anesthesiologist.  When I told my dad this, he made a disapproving sound, and I said “NO!  That’s good.  I was happy.  That’s the kind of guy who isn’t going to hold back on the anesthesia.” 

See, apparently when Dr. Cordaro my surgeon who put Mort in just knocks you right out.  Dr. Varma has you awake but in “twilight.”  That can mean a lot of different things from my experience.  I know that during this procedure, your arms are basically tied down – look, if you feel the need to TIE DOWN MY ARMS, then you should probably just make real sure I do not care what’s going on.  So, biker-dude anesthesiologist and I had a little chat.  And I’m happy to report, we understood each other perfectly.  The procedure began with him injecting me with some drug that starts with an F.  Maybe fluvoxa-something?.  And he said “Your cocktail, my lady.”  And then he gave me another one.  Dr. Varma asked “How are you feeling? ”  And I said “Fine now, but scared it’s going to hurt.”  He gave the ok to give me another dose.  Then he started cutting into my chest and neck, but I could not possibly have cared less.  They had a little paper sheet over my head and I stared at the blue fabric with great interest and mentally floated on clouds.  Soon, they were done and I was wheeled back to the recovery area.        

My new port and I are getting used to each other. 

She’s new.  She’s sleek.  She’s a lean, mean, chemo delivery machine.  Introducing…Portia! 

I broke up with Mort the Port at the recommendation of my oncologist in February.  The severance was quick, not exactly painless but I healed quickly.  I thought I’d try being on my own for a while.  But it turns out, I’m not cut out for port-free living. 

Portia and I – I know, it’s a new relationship, but so far, well, we just work.  Unlike Mort, she doesn’t mind if I sleep on my side.  And she doesn’t insist on bulging out quite so brashly, announcing to the world that we are together.  She’s more confident, secure in herself.  Humbly dignified.

As long as she’s not shy with the chemo nurses, I think I’m in this partnership for the long haul.  Eat your heart out, Mort.       

We met with my doctors (liver surgeon, Dr. Tsung, and my trusty oncologist, Dr. Mehta) on Friday.  Apparently my case made it to the UPMC tumor board, whatever that is – a group of specialists that discuss interesting cases, I suppose.  Dr. Mehta likes to brag about me so he told everyone about my triathlon and breath holding skills. 

We got some good news Friday.  One is that Dr. Tsung doesn’t feel that my cancer is particularly aggressive – it’s been growing slowly, he says.  I wonder if my physical activity and generally anti-cancer lifestyle have helped.  Doctors tend not to think that way, but I think you have to look at the big picture.  How can what we eat and how we live not have an impact?  I’m not saying you can cure yourself with leafy greens but it’s worth giving up the bread and cake to give yourself an edge.  Since my CT scan, I have gotten very serious about my diet.  I am actively attempting to bring my weight down to reduce the amount of fat in my liver (down 11 pounds so far!)  And I am avoiding foods that are known to be cancer-feeding.  So this means:  no sugar, no processed junk, virtually no starches (I’m eating some hummus and beans which have a little starch in them) no red meat or pork, no fruit except berries.  So what I AM eating is:  lots of fish, organic chicken and turkey, organic veggies and some strange things I’ve researched that seem to boost one’s immune system and fight cancer including:  Noni juice, a raw, organic green super food powder, lots of fresh ginger, garlic and turmeric.  The noni juice smells and tastes pretty terrible.  I figure it must be doing SOMETHING if it tastes that awful.  🙂

Other good news we’ve gotten is that I am negative for two genetic mutations that are bad.  I’m not clear on exactly why, but if you have them, your cancer is harder to treat.  So, I’m in the “best” camp of Stage 4 colon cancer patients.  This situation is not good by any means, but my spirits definitely lifted some when I heard this news.  Both of my doctors seemed energized and ready to get to work on this stupid cancer. 

We start tomorrow.  Dr. Mehta is adding a third drug to my chemo regimen.  He cautiously delivered this side effect news to me:  It’s going to make my face break out like the worst teenage acne I have ever seen.  He said “The effect varies but you need to understand, your face will not be as pretty as it is now.”  I am struggling with this for one reason:  I have always been able to decide if I want people to know something is “wrong” with me.  But between this fanny pack infusion business and my face looking like a disaster, that choice seems to be less available this time around.  It will be humbling to draw attention in this way.  But as my mom and I discussed – what an opportunity to show my daughter, who could very well have acne in coming years, how to deal gracefully with this particular life challenge. 

I’m wrestling with the feelings.  Annoyance, fear, embarrassment, worry and frustration with myself with caring about how I look.  I’ve never “gotten by on my looks” per se.  But I never really stopped to appreciate just looking “normal.”  Cancer is a thief.  It tries to steal just about everything.  Physical comfort, energy, hope, confidence.  But. 

God is in His wheelhouse right here. 

Do not conform any longer to the patterns of this world, but be transformed by the renewing of your mind… 


Beauty is fleeting but a woman who fears the Lord is to be praised.


Instead (your beauty) should come from your inner self, the unfading beauty of a gentle, quiet spirit.  (I know, I need some work here.)  🙂


Be joyful in hope, patient in affliction…


Consider it pure joy when you face trials of many kinds…


Blessed is the man who perseveres under trials…

It’s another thing to entrust to Him.  Plus, I’ll know who my real friends are, when people start avoiding me because I look like The Swamp Thing.  🙂     

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Next stop: Duke University

My next step on the journey to fully defeat cancer starts on September 8th.  I will be traveling to Duke University in the Raleigh-Durham area of North Carolina to participate in a clinical trial for a vaccine that is intended to bolster my immune system in order to prevent the recurrence of colon cancer.

 

 

 
That’s what it looks like at the cellular level, apparently.  A preschool art project.  
 
Yes, as far as we know, right now I’m cancer free. But there is a high likelihood that my cancer will come back. And while it’s entirely possible that it won’t, I am not comfortable just sitting around and waiting for that to happen.  So, I’ve decided to be a guinea pig.
 
It was not an easy decision. Of course all kinds of weird books and movies go through my mind. I’m getting injected with a virus! I could actually start the zombie apocalypse, People!  
 
But after a lot of thought, research, prayer and conversations with people I respect, I’ve decided to go for it. I am not excited about getting on an airplane four times in the next few weeks. I hate flying,  I hate traveling unless it’s for fun.  I’m sick of my life being disrupted. I’m not a fan of getting poked and prodded. I don’t really want more doctors in my life. Doctors are mean sometimes! I’m a little bit scared that something weird might happen to me.  I don’t want the inconvenience for myself or my very accommodating family.  I don’t want the side effects.  (Nothing too crazy, just nausea, fever, fatigue, etc.)  I don’t want to keep feeling like I’m under a microscope. I don’t want to have to think about cancer all the time. I don’t want to schedule my life and other people’s lives around another cancer thing.  We’ve been through so many tests and procedures.  Surgery.  Chemo. Side effects. I just want NORMAL for a while.  
 
But I want to live. And this is something I can do to increase my chances.
 
There’s so much I want to do, so much to live for, so much to see, so much to learn.  I’m busy!  I have plans!  I still haven’t met Bono!  Cancer, like those horrible terrorists in Iraq, has this tendency to go away for a while and then sneak up on you. I’m not letting that happen, to the extent it’s possible.  This vaccine might be the Seal Team Six to add to my already active forces.  
 
Besides, we might be making history. I might be a part of groundbreaking research. We might be curing cancer.  This is a way I can help.  
 
So, after reviewing my oncology records, they approved me to do the on site final screening.  I will go down for the initial visit (sadly, spending my 8th anniversary away from my husband) and hopefully get my first injection the next day. I will be traveling there every three weeks, three more times, to complete the cycle.
 
The officiant of our wedding, John, who is in ministry in the area, along with his wife, has agreed to house and shuttle me around for the first visit.  What a blessing!  It reminds me of the realness of the body of Christ. This is a man who I knew only through friends and a few good phone conversations back when I lived in Seattle.  In 2006, he agreed to do our premarital counseling, and travel from North Carolina to Pittsburgh to marry Kevin and me.  We have only seen him twice since then. And now eight years later, he was quick to offer help with all of this.  Two close friends of mine (one who is in the middle of moving!) were so quick to offer rides to the airport and any help that I would need. My husband is a little nervous about this whole deal, but he kindly booked my flights for me because I’m notorious for screwing that process up.
 
I said recently that we need fewer activist Christians walking around judging people’s behavior, and more silent servants of Jesus. This is what I’m talking about. Service.  Once again, cancer, enemy that it is, shows me love and care and glory.  Once again, I’m humbled.  
 
Pray for me and this strange chapter of the battle.  
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Want to know what chemo is like?

Not every cancer patient gets the same chemo drugs.  Some people get one drug.  Some get four.  I get two.  Here’s how it goes down.
The morning of my treatment, I get up and start my two week cycle of oral chemo.  This drug has a few side effects including nausea, weakness, fatigue, muscle aches and headaches.  I get all of them to varying degrees. But, so far, none to the point of stopping me from getting through a normal day reasonably well.  

My husband, aka, my driver, chef, and wiper of tears on bad days, takes me to the cancer treatment center.

In Pittsburgh, there is an enormous, fancy, well funded cancer treatment center called Hillman. It’s got sculptures, fountains and free lunch. The place I go? Is not that. But it’s close to my house and I like my doctor, so I’m ok with a boring, clinical setting. We arrive and wait a bit in the waiting room. I always notice the people there. I am always the youngest and seem the least sick. I’m never sure how to feel about that. I’m tempted to feel a little sorry for myself because, geez, these people typically have 30 years on me at least. But on the other hand, I’m feeling good enough to take a shower and put on lipstick and earrings and wear boots that once, an elderly but sassy patient loudly pointed out were not worn by “nice girls back in her day.” So mostly I feel thankful that, at least so far, we don’t really need to use the “cancer patient only” parking spaces.

So we get called back and they take my vitals. They then access Mort the Port. Mort is located below my collarbone on my left side. He’s about the size of a peach pit and he makes a weird little bump. 

 Via Mort, they can draw blood and give me medication. They also have to flush him with saline, which makes my mouth taste like metal for some reason. It is weird and gross. They then give me my pre-meds which include some fluids, steroids and anti-nausea medication. About then I meet with my doctor who is about my age, Indian, friendly and funny. I like him a lot. So far we’ve only gotten good news from him, such as stellar blood work and so far no evidence of cancer cropping up in other places. So my meetings with him have been pleasant and positive. He says I’m a trouper and he is impressed with my staying active, working, etc.

Then I head to the treatment area. It’s a large room with about 10 chemo stations. A lot of the people there are pretty sick. But most have a companion (spouse or friend or relative) with them and everyone seems to stay pretty positive even if they are weak and not feeling well. They hook me up to my IV chemo, a drug that causes all kinds of weird side effects. But during the infusion time, nothing major happens. My mom arrives.  My husband goes to work.  We chat, play Scrabble.

I watch hilarious videos on You Tube.  Have silly text conversations.  Answer work emails.  This all takes about 3 hours. It’s afterward that things get weird.

Different types of cancer require different types of chemo. So mine may be different than someone with, say, breast cancer. Plus even the same drug may affect two people differently. So this is just what has happened to me so far. When I leave the center, I have to keep my hands and feet warm because the cold paralyzes them and makes it feel like they are being stung by a swarm of bees. And I cannot breathe in cool/cold air. If I do, my breathing becomes like someone who has just climbed 5 flights of stairs quickly. I’m out of breath and cannot “catch” it even though I am not at all over-exerted. The cold air paralyzes and causes spasms. It’s very weird. So I wear a scarf and keep it tight over my face. Mind you, it’s only been about 45 degrees so far. So, I’m sweating because I’m wearing gloves and warm socks and a scarf. It is very hard to explain to someone that you are both overheated and fearful of letting the cold get to you. People have a hard time understanding this, but I wouldn’t understand it either.

The cold sensitivity also includes food and drink. Can’t ingest anything cooler than room temperature. If I do, it feels like I’m swallowing tiny porcupines. This is tough because dehydration is a major risk with these medications and one can only drink so much hot tea.   But I’m becoming a bit of a tea snob.

Also, anything sour, sweet or pungent (like a sharp cheese) is off limits. It feels like I just took a giant swig of pure lemon juice. So my diet for a week or so is warm and bland. Which is fine, because I am also nauseous. Not like toilet-hugging, stomach flu nauseous. Just unsettled and unpleasant. Nothing sounds good except, say, crackers, macaroni and cheese, toast. You get the idea.

A new side effect this time around is muscle aches. I also got a flu shot (my first ever) so maybe it’s from that. But this is for the birds. I keep waiting for a magical fairy massage therapist that does house calls to show up.

Another new side effect is that cool air or tears hurt my eyes. That’s just great. Because, you know, you never feel like crying when you have cancer. Honestly this one is just funny to me. Like…seriously?! My new motto is “There is no crying after chemo!” Seriously, I cried a little bit yesterday and immediately decided that there will absolutely be no more of that until this stuff wears off a bit. A friend’s daughter sent me a beautiful painting of a stained glass window from her church today. It was so sweet I got a tiny bit weepy and had to be like “Nope. No way. This is not adorable at all.”

So, it will be like this for a while. But it gets better. I still have to take the oral medication for two weeks, but my body seems to tolerate that much better than the IV chemo I get. Now, lest you think I’m just sitting here feeling bad and sorry for myself…I’d like to end with some gratitude.

I’m grateful for my husband handling everything while I am pretty much just capable of getting through the day. I’m thankful for my mom making sure I have everything I need and taking me out when I’m up for it. I’m thankful for the awesome care packages and cards and texts and shout outs on Facebook. I’m thankful that people care enough to read this blog. I’m thankful I’m not sicker. I’m thankful that God has been faithful every step of the way, giving me hope when I need it, grace when I need it and peace the entire time. I sincerely am filled with peace and even joy almost all of the time. Cancer does some terrible things. But it is making me tougher, wiser, kinder and more faithful every day. So, I’m grateful for this experience, even the messy, painful parts.  Besides…I’m a fighter, yo.

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Chemo Smackdown-O-Rama-Fest: Round 1

Morning of first chemo treatment.  Most people wear sweats.  I say, intimidate Stupid Cancer with fierce style.  It’s easier for me to stay upbeat and my usual charming self when I’m looking presentable.  Leopard print all the way.

We arrived at the treatment center and got hooked up via Mort the Port to an IV of pre-meds.  (Steroids and anti-nausea stuff.)  We then met with my doc, Dr. Mehta.  He gave us good news: my cancer has NOT spread.  They hadn’t assumed it had but its good to know concretely.  Also my blood work (white blood cells, etc. were all in normal ranges.)  **These are answers to prayer.**  When God answers our prayers so clearly – its worthy of a moment of our time and consideration.  We have to pause, acknowledge, give thanks.  He does not always answer with what we are looking for – sometimes the journey is longer than the one we planned for.  But sometimes we get a simple gift like this.  I am grateful.  I give thanks that this cancer hasn’t spiraled out of control.  There is an army in my body fighting it, and it’s doing an amazing job.  I’m thankful for my surgeon who did a difficult surgery well and removed what was visible.  Thank you, Lord for all of your provisions.  

So then we got hooked up to the real stuff.  Chemo.  Oxaliplatin is the big dog of chemo drugs that I’m taking.  So into Mort the Port it went.  It took about two hours.  It was uneventful.  During that time, I read funny texts from friends, watched videos on You Tube, ate some cheese and carrots and talked to Kevin.  They have a snack bar at the center.  It’s not very healthy which I think is weird.  A poor diet does not help in the cancer battle.  But I guess with chemo patients, whatever you can get down the hatch is good.  And sometimes that is Lance brand neon orange peanut butter crackers.  Blech. I tired to imagine how I could politely suggest some organic fruit or air popped non-GMO popcorn.  But…I want them to like me.  So I’ll bring my own snacks and Kevin can eat the cupcakes.
So they also gave me my oral pills.  I have to take five in the morning and five at night.  This drug is called Xeloda.  
Kevin meticulously filled my giant pill box for me.  He will almost certainly do this for me every week.  The fact is the man is significantly more responsible than I am in such matters.  That’s why he’s the precision baker and I’m the chef with full creative license.  Recipes, schmecipes.  So Kevin is the family pharmacist.
The infusion was complete and we left.  We were both hungry so we went to Mad Mex.  a friend’s response: did you really think Mexican was the best choice immediately following chemo?  Fair question.  First of all, I got black beans and rice and tofu in a dry tortilla so it wasn’t like I got the drippy, crazy meat-filled enchiladas.  I passed on the margaritas, too.  🙂  But I really haven’t felt super nauseous.  Just a little bit queasy.  So far, eating helps.  So bring on the tofu!
What I have had in terms of side effects in the past 24 hours have been with neuropathy/very high sensitivity to cold food/beverage and touching stuff that’s colder than room temp.  
The very bad thing that happened was when I took a huge swig of iced tea before I knew what would happen.  Awful. I felt like I drank Drano.  It scared me.  I had no idea what they meant when they said “cold sensitivity.”  It was pretty horrible.  Like trying to swallow a raisin that suddenly turned into a tiny porcupine.  All scratchy and spiky out of nowhere.  Also, strong tasting things like olives, vinegar and sharp cheeses do something weird to my mouth.  It feels like biting into a giant lemon.  That “sour” reflex is in overdrive somehow.
On the tactile front…touching something cold is like grabbing onto an electric fence.  It’s very strange to have your own body mess with you like that.  I’m so grateful to not be vomiting all day like some people do with chemo (fingers crossed on that one!)  But it’s weird and inconvenient to have to adjust what you eat, drink and touch.
Right now I’m feeling ok.  I’m a little bit apprehensive because I know that it gets worse before it gets better.  The last day has told me that I cannot predict what’s coming next and I don’t like that.  This may be the toughest one for me out of the 8 rounds, simply because its all a mystery.  Everything is fine and then my body betrays me.  I’ve spent 35 years in it.  It’s like if a good friend who has always been kind and dependable suddenly starts acting like a total bitch.  
So this is where we give ourselves a moment.  Acknowledge the difficulty.  Acknowledge the frustration.  Choose to accept it.  Then turn our thoughts and our hopes heaven-ward.  People say I’m strong.  I am.  It would be false humility to argue that.  I was raised to be strong.  I have experienced success that galvanizes my trust in my own abilities.  Whatever you’ve got, bring it.  I love a challenge and I plan to win.  It’s my job to get people to understand why they should give their hard earned dollars to help unemployed, homeless drug addicts.  I’m not selling sports cars to men in the midst of their mid-life crisis or pacifiers to desperate new moms.  Lets just say I’ve chosen a field where it’s not an easy sell.  A former supervisor once said about me “she could sell snow to the Eskimos.”  Well I’ve never tried.  But I would probably give it a shot.  
But I can’t do it all.  
I’ve gone as far as I can go on my own strength at the moment.  So “I lift my eyes up…up to the mountain.  Where does my help come from? My help comes from you – maker of heaven…creator of the earth.”  
So, I lean into God today.  Giving Him my anxieties and worries.  Believing He will provide whatever is needed at the most appropriate time.  Sometimes that comes in the form of a good test result, help from a loved one, a cheerful card, an unexpected moment of peace.  

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Learning from cancer

So I’m reading a lot about suffering, struggles, sickness, etc. It’s heavy stuff. But it’s hopeful stuff. I’m making my way through Tim Keller’s excellent book Walking with God Through Pain and Suffering.

Dr. Keller is a giant of the faith…super smart, wry sense of humor, a man who has had his own share of struggles. Yes, please. Give me a man who loves Jesus, has a PhD and has been through cancer – triple threat, Baby. (A far cry from the days when, to me, a real man was any guy who drove a Jeep, wore Birkenstocks and listened to Dave Matthews. Ick. If I met my 16 year old self now, I would basically hate her.)

So Tim Keller talks a lot about how our culture tells us that adversity, suffering and struggle are bad – they are something to get past so we can get on with real life. Suffering such as dealing with cancer is a life disruption, a snag, an interruption from our regularly scheduled programming. But reality – biblical, real life? It says this is IMPORTANT. It’s not an accident, it’s not punishment and it’s not to be squandered. Which brings about another one of my cancer boyfriends (i.e. spiritual advisors I have never personally met) John Piper – now, he’s said some, in my opinion, unnecessarily annoying things on some controversial subjects, but I choose to ignore those, and focus on the wisdom I think he does possess. His challenge to someone like me is “don’t waste your cancer.” Intriguing, no? It’s a whole new way of looking at this kind of situation. Here are some of the more interesting ideas:

You’ll waste your cancer if…

-you don’t believe it was designed for you by God. (Whoa! Can that be true? I think it probbaly is. It’s ok if you don’t. But think about God’s soveignty – if He’s in control of everything, He can choose what to allow and what not to.)

-you consider it only to be a curse and not a blessing. (Again. Whoa. My cancer can be a blessing. It’s hard to think this way, I know. But I can see how this is possible. It’s not easy to believe that might be true. But it’s worth some consideration.)

There are other interesting and challenging ideas in this piece. See them here.  http://m.crosswalk.com/faith/spiritual-life/don’t-waste-your-cancer-1383847.html

In other news, Mort the Port is healing well. I am gaining confidence in movement – at first, it just felt icky, and I did not want to move at all, worrying that I might dislodge it or something, but that is improving a lot. Chemo begins Thursday. I am pretty confident, however, it should be noted that I have a pattern that I’ve noticed. I don’t worry about upcoming doc appointments, I don’t think too much about them. I arrive in a sunny, calm mood, and suddenly unexpectedly intrusive, embarrasing or painful things are happening that I have not mentally or emotionally prepared for. So, I’m trying to consider that they will probably tell me something disappointing, ask me to take me clothes off or hurt me with a needle in a way that I was not expecting. I will report back later in the week, on what the unanticipated experience of the day is.

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What's behind door number 1? A lovely PET Scan!

Today I had a PET Scan. This test involves the following:

– Getting up ridiculously early. Probably not every time but in this case, it did.

– Nothing to eat/drink that day – pshaw, that’s nothing after a liquid diet for a week.

– Hang on. yes, it is something. Because…coffee. Yeah. No coffee. 🙁

– Then, Crystal Light time. I assume it has something medically necessary in it.
– Vein abuse is next – if I had a nickle for every IV, blood draw….I know, it’s only just begun.

– Weird radioactive dye. The IVs gross me out but the injecting of weird stuff. Eeeeeek.

– One hour of “sitting quietly.” I am not sure why I have to be quiet.

– So, Candy Crush (level 59, yo.) Also music. Mid-90s worship music. (I know, I’m the pinnacle of cool.)

It’s not so bad. They give you a warmed up blanket. So you “sit quietly” for an hour. This part was actually kind of nice, once I can tune out that icky needle-in-my-arm feeling. Then they put you on this bed and it moves you through this iPod colored (clinical white) tunnel about 6 times over 25 minutes. Clustrophobes beware. They also give you this weird iodine injection that makes you feel like you are having a major hot flash. Thank God they warn you about this, otherwise you would think they are accidentally microwaving you. Honestly, the first time I had this done, I would have totally freaked out if they hadn’t given me a heads up.

In 24 hours the results (which hopefully show nothing we don’t already know about) will go to my doc and as long as all is (relatively) well, this will be the baseline from which they compare future PET scans to make sure Cancer-o-rama isn’t spreading into my liver or lungs. It better not. No, stupid Cancer. Sit. Stay. Die.

My state of mind is pretty good. I’m calm. I feel hopeful and grateful. God is meeting my needs, daily. I am treating this experience as a growing opprintunity that is preparing me for future difficult, challenging circumstances. I am believing that God is using this to soften and stregnthen me, to build me up, to shine light in darkness, to spread hope and bring clarity. The verse that has been shared with me over and over – it comes to mind continually and others share it to encourage me….

For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. 12 Then you will call on me and come and pray to me, and I will listen to you. 13 You will seek me and find me when you seek me with all your heart. 14 I will be found by you,” declares the Lord, “and will bring you back from captivity.[b] I will gather you from all the nations and places where I have banished you,” declares the Lord, “and will bring you back to the place from which I carried you into exile.”

Many complain that this verse is taken out of context. And it is. This is not a personal message from God to me, necessarily. It is comforting to think of it in that way. And that’s probably ok. But the real message of this Scripture…the fact that God is addressing not one person but a NATION, and that it refers (if you get real dorky into the original language and intended meaning) not only to those people way back then, but a future people, you see that it’s even bigger than God knowing the plans He has for me (which He does, of course.) But it’s talking about US. The Kingdom of God. The Church. Redemption for all who seek His face.

I want to live a long time. And I believe I will. I’m here for a reason, I have a lot of accomplish on behalf of the Lord and such. But. If we believe in Him for what He says He will do for us. If we believe in the truth of the cross. If we buy into it, if we throw all our chips in, betting on Jesus…If that’s true, if we’re right. It doesn’t really matter. Because the glory to come…it makes this whole thing so tiny and brief and insignificant. We will be together in the end. Forever. It will be better than we could ever imagine. He will make every sad thing untrue, to roughly quote Tolkien.

So, all that to say…I’m still planning on kicking this thing’s ass. Well, God will do His part, I’ll do mine – you know, that whole business of working as though it depends solely on you and praying as though it depends solely on God. If you want to do your part – keep praying. And bring me your best effort at a Mac & Cheese recipe. Unless I decide that my part includes going vegan. 🙂

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The New Normal

On October 4th, 2013 I had colon resection surgery to take out a section of my colon that contained a mass that was causing some embarrasing bathroom problems – namely bleeding when I went number two. (I cannot believe I am saying that “publicly!”) I have had this issue for a long time but was told that it was hemorrhoids. (Again with the TMI. Headline: Lemon loses all concept of privacy!) “Eat more fiber,” the doc said in Seattle in 2003. But after ten years of this crap (ha! See what I did there?) I talked to my primary care physician, who I love and he sent me to a specialist. Long story short, that guy, who I will forever be grateful to despite him putting me through several deeply mortifying procedures, found the stupid tumor.

So, though a biospy said it wasn’t cancer, my surgeon begged to differ. Either way, it had to go, but he was pretty sure we were going to find bad news. I had surgery to get rid of that mass of evil tissue. I came through the surgery great. Three days after, when the docs came to my hospital room on morning rounds I was in designer PJs, with my hair fixed, earrings in, make-up on, yapping on my cell phone. They just laughed at me. Apparently this is not the norm after such a surgery. So I was in great spirits and ready to head home the next day.

I spent the next few days convelescing at home receiving visitors and cards and fruit baskets. I kept a stack of one-dollar bills handy to tip those flower delivery people since they seemed to be showing up every few hours for a while there. My incision was healing nicely and my strength was returning. I was feeling great. It had gone so well, I’d almost forgotten about the C-word. Until Sunday, October 13th when I got The Call. My surgeon woke me up Sunday morning with a call that I will never forget. One that took my very breath away. “Cancer,” he said. “Stage 3b.”

I really wasn’t expecting this. What with the constant praying and all. Of course the doc called during the one 30 minute period when my very caring and helpful husband had gone for a run. He had parked our 4-year-old in front of some cartoons and figured he’d be back before I even woke up. Wrong. It was a very difficult 30 minutes. Fear and despair washed over me. Hard. I felt like I was falling. But I was oddly calm. I called my mom and had to tell her this news that no parent wants to or should even have to hear. It just didn’t feel right or fair or ok. To be honest, all seemed wrong with the world.

This was one week ago. What a week it has been.

It has been a scary week. I mean…seriously!? I have to think about a world without me in it. And what it might be like for my kid to grow up without a mom? Oof. That one hurts. And what might it be like to die? Who wants to think about that at the age of 35?

It has been a sad week. I cry a lot. I do. It’s overwhelming. This is a complete life disruption and I’m sad about it. I just want to go to a bar and watch the Steelers play with my friends. Instead, I’m making oncology appointments.

It has been a wonderful week. Yup. It really has. I am learning SO much about how God can use this and how God IS using this. I am being plunged into this crappy muck, yes, but I’m learning what I and the people who love me are made of. I am learning how strong and kind and generous the people God has blessed me with are. I am learning what the bible has to say about suffering and trials. Check this out:

“…since we have been justified by faith, we have peace with God through our Lord Jesus Christ. 2 Through him we have also obtained access by faith into this grace in which we stand, and we rejoice in hope of the glory of God. 3 Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, 4 and endurance produces character, and character produces hope, 5 and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.” – Romans 5: 1-5

We rejoice in our sufferings? Crazy, right? Just how is this possible? Well, while I’m no expert, I have a little bit of growing insight thanks to some intense prayer, a lot of Scripture reading, and investigating some trusted pastors’ teachings (Tim Keller, Allistair Begg and John Piper to name a few.) Here is what I’m learning:

To know Christ, to be forgiven and therefore in a right relationship with God, means that we can know, FOR SURE, that God has not abandoned us. You got that? Icky, scary, ugly circumstances are not an indication of God’s leaving us or not loving us. That is an unbiblical view. While sin can lead to natural consequences and at times our suffering is a result of our sin, suffering is not a punishment and it does not mean that He has forsaken us. He has, in His infinite wisdom allowed this, and not by accident or neglect….by DESIGN. This is my path. This is my fight. This cancer is putting me and my faith to the test. Do I really love God and want to serve him? Or do I only seek to have Him serve ME? If we ditch our faith in the midst of these trials – that is what we’re saying…that we were only in this to see what God could do for us. Not to serve him no matter what.

I’m learning how cancer (or whatever you’re struggling with) can be a gift. I know, that sounds nuts. But really. No matter the outcome, I know I am going to be refined through this. In a way that I could never have been apart from it. What is truly important and what is unimportant – these things are becoming increasingly clear. Who is really in this with me – that is becoming clear, too. Also, God is meeting me in my uncertainty, leading me to encouragement and refreshment in new and deeper ways.

So, we’re just a week into this diagnosis. The chemo hasn’t even started yet. The lessons are just beginning. The story of this trial is still in the prologue. By no means do I think I get it yet. But this is where we are. And I’m already different.

“Here am I. Send me.” – Isaiah 6:8 (It’s not exactly the same kind of situation, I know. But what I’m saying is. I’m willing to walk through this.)

Besides, I’ve got this to live for.