Tag: cancer

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God shows up.

Sometimes, I look up to the sky and wonder if all that I believe about who God is is true. Some days He feels far away. Some days, I think how much I operate from the foundation of my faith and how crazy it would be if none of it was true.  Almost like a mental illness. Like if I lived my life believing I could fly if I wanted to. Or that I could see things that other people didn’t see. I am sure that atheists think this about we crazy Christians. If I wasn’t a Christian, I would definitely think the Christians were crazy.  Well, actually there are plenty of people who call themselves Christians who are certifiably crazy. 

But sometimes, God shows up in such undeniable ways, it makes me sure. Like totally 100% sure. Let me share two things with you.

Early this morning I got an email from a lifelong friend. A woman who I’ve known my entire life. She shared a recent email I wrote with people from her church.  The email was an update about my situation and some general thoughts about how I am grateful and confident in God.  She had gotten a response to the email from someone active in youth ministry. Apparently the topic of cancer had come up recently and she was struggling to talk to young teenagers about cancer through the lens of faith.  My email really touched her heart and gave her a new place to start the conversation from. It was just what she needed to read and she wondered if she could share it.  

That energizes me so much and makes me really excited for how God is using this terrible situation to encourage and comfort others.

That was a great way to start the day. But it gets even better.

Later this morning I saw a lovely woman at Cassidy’s soccer game who has a shaved head. 


It seemed fairly clear to me that she probably was in cancer treatment. However, you don’t want to assume. And you also don’t want to invade someone’s privacy. But although I’ve seen her twice before, I could not shake the feeling that I should talk to her today.  What a weird thing to do, but I knew I had to.  

I walked up to her and I said “hi. Sorry if this is weird, but I have cancer. I’m starting to lose my hair and may have to shave it.  I noticed that you are rocking that look really well so I thought I’d ask you about it.” 

She beamed a gorgeous, friendly smile at me (whew!) and told me she had breast cancer.  We started chatting.  

After a few minutes she asked my name and said “I just read this blog post that reminds me of this…”

I told her that I have a blog. She asked me if I knew someone named Katy Ursta. (I just blogged about my friend, Katy.)  I started laughing and said “I’m lemonscarlet.”

She got tears in her eyes and said “I have chills.” She told me that she had just had three different people send her a link to my blog and she finally read it last night. She said she was too tired to do it then, but that she had planned to message both me and Katy on Facebook because she was so inspired by it.  She couldn’t believe that I just walked right up to her that morning.

I mean, what are the chances?!  We both felt like it was from God.  I know I was incredibly encouraged by this.  I hope to continue to get to know her.  As you pray for me, pray for Jennifer, too.  She’s almost done with chemo and has four active kiddos to chase around the soccer fields.  

God is good, my friends.  


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Young Women Get Cancer

I mentioned casually to a friend recently that I have several
friends who are either currently fighting cancer, in remission or have passed
away from cancer.  She looked at me,
shocked.  She wanted to know how many
people we were talking about.  2?  4?  I
thought about it and realized that I have way more than that.  She acted as though this was quite surprising.  I don’t think it is anymore.  Young women get cancer. 
My cancer was discovered much later than it should have
been.  My presenting symptom (TMI ahead!)
was blood in my stool.  But I had seen three
doctors about it over ten years (TEN YEARS!!) and until I was diagnosed, was
basically told to eat more fiber.  I knew
something was wronger than that, and I honestly put off pushing for diagnosis out
of fear and embarassment.  (You haven’t
lived until a doctor is closely inspecting that area of your anatomy – bucket list
alert!)  I don’t live in the space of
blame, but I deeply regret not advocating more for myself, and wish I hadn’t
been so embarrassed to discuss a little blood in my poop. 
That regret and deep desire to help others avoid my mistakes,
I believe, is part of the significance of my adventure with cancer.  Those feelings are difficult to live with,
but I feel propelled by them in a positive way. I think I can make a difference
by broadening the scope of topics that are ok to discuss.  Think of it this way.  20 years ago the term “breast cancer” was
whispered shamefully.  We didn’t talk
about diseases that kill us and we didn’t talk about our boobs!  Now, you have NFL players sporting pink shoes
and there is a line of products with the phrase FEEL YOUR BOOBIES splashed
across them.  It’s ok to talk about
breast cancer.  Say what you want about
Susan G. Komen (many survivors do not love this organization) but they nailed
it in terms of social marketing.  They changed
the game. 
I want to change the game, too.  I want to help people do three things:
1.      Be more aware of your body – are you having
symptoms?  What are they?  Where are they?  How long do they last?  I want to end this mentality of “If I ignore
it, it will go away.”  That’s how people
die.  Early detection is KEY.  Cancer treatment is changing.  Sooner is better.  Waiting gets you a big fat NOTHING. So…CHECK IT.  
2.      Get over the fear of bad news.  Look.  “Bad
news” is a DIAGNOSIS.  A diagnosis is
GOOD.  Does anyone want to hear they have
cancer?  Nope!  But right now, if I could go backwards in
time to 2005 and get a Stage 1 cancer diagnosis instead of what has become a
Stage 4 diagnosis, I would be thrilled to be told I have early stage
cancer.  Overjoyed.  You can’t fight what you don’t know.  So…CHECK IT.  

3.   Get thee to thy doctor!  Scared of your doctor?  Find a new one.  I went through many crappy doctors before I found
my guy.  Dr. Martin Seltman at Metro
Family Health Center in Edgewood/Regeant Sq. 
He treats me with respect and dignity and as a partner in my care.  If it wasn’t for him, my PCP, I would never
have gotten to a specialist who diagnosed me. 
He’s my hero because he was a safe enough person during routine sinus
infection visits for me to finally whisper my terrible secret.  I recently wrote him a note because I thought
I should tell him how much his kindness and professionalism have impacted my
life. So…get a good doc NOW and CHECK IT.  

Check your boobs.  Check your butt.  That weird bump?  Check it.  Checkity check check check.

I’m featuring some friends in coming blog entries who are
fellow cancer fighters.  Warriors.  Bad Asses.  Diligent checkers.  First up is Katy Ursta.  
Katy is a
mom of two, wife of a great guy (who I happened to babysit many moons ago!) and
a top notch Beach Body coach.  She has
created a business that allows her to share her passion for fitness, transformation
and helping others, and allows her to work from home.  Katy was in great shape, active, happy and
enjoying a busy, productive life when she noticed a couple of odd
symptoms.  Her lymph nodes were enlarged
and her legs were dry and itchy.  She was also weaning her son and had some issues that presented as mastitis in her breast.  Smart
lady that she is, she went to her doctor and it was quickly discovered that she
had Stage 4 Hodgkin’s Lymphoma, a blood cancer that causes tumors throughout
the body.

Katy wasn’t about to take this lying down.  She went straight into chemo and continued
working out daily, dedicating her workouts to fellow fighters.  Example: 
“Today, we’re sweating for Jessi.” 
What an inspiration!  I know that
while we were in the chemo trenches together, she would spur me on to get
active even when I felt my worst.  Katy
has used her unique position and experience to develop a platform for speaking
and helping others get in shape.  She is
partnering with me in raising awareness among young people to not ignore those
symptoms, not fear diagnosis and get to the doctor.  Katy is a beautiful spirit who I am proud to
know.  She is generous, fun, friendly and
full of energy.  If she doesn’t inspire
you, no one will.  I encourage you to
check out her blog.  If you are looking
for a compassionate, supportive person to guide you in an effort toward better
health, she’s your girl.  Check it:    www.onefitfighter.com

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Next up: round 4

Let’s talk about chemo. 

I get a lot of questions about how my chemo works, and since I just completed my 3rd cycle, and tomorrow begin my 4th, I thought I would explain how my customized protocol happens.  I say this out loud as an answer to a question about 5 times a day.  So, if you ask me, I’ll know you don’t read my blog, or that you stink at reading comprehension.  Just kidding.  I know, I can barely keep track of it all myself and I’m the one doing it, so if you forget, it’s ok.  I don’t mind. 

The cycle starts on Monday.  Kevin and I go to the UPMC Cancer Center in Monroeville.  We meet with my oncologist, Dr. Mehta.  He is on the young side, and the right mix of serious, funny and hopeful.  I trust him and look forward to seeing him.  He asks how I’m doing, we go over any new side effects.  This time, at tomorrow’s visit we will be having a major discussion about my nausea from last time.  I have a folder’s worth of research in my head and my expectation is that he will be very responsive and helpful.  We need to get this nausea under control. 

After we meet with him, they draw blood to make sure my levels are high enough to withstand chemo.  This is my 12th round of chemo in my life (8 last time plus the three I’ve had) and I have always been ok.  However, I closely review my own blood work and I notice a few levels that are concerningly low. We have discussed this and Dr. Mehta has a close eye on them.  After they take my blood, I go back to the room and pick a chair.  The room is open, with waist high walls and partitions.  I try to get a chair in a sectioned off area – depending on who my companion is, we can be a bit rowdy, and many chemo patients nod off to sleep during treatment.  Kevin stays with me until I get hooked up to my pre-meds and then he goes off to work.  Usually my mom comes, but if she is otherwise engaged, like watching Cass if she has the day off school, different friends fill in as chemo companion and chauffeur. 

The pre meds are dispensed via IV.  They include fluids for hydration, (basically everyone in chemo is dehydrated.  Want to be a pal?  Offer me hydrating beverages whenever you see me) steroids, (they help your body deal with the side effects) and anti-nausea medication.  This takes about an hour. 

Then, they change the bags and bring out the chemo drugs.  Oxaliplatin is the main drug for my type of cancer.  It’s side effects are primarily nausea, fatigue, hair loss and cold sensitivity and neuropathy.  This means that for a few days I can’t touch or drink cold things – it causes a seriously unpleasant sensation.  To the point that even when that effect has worn off, I get anxious, worrying that touching or drinking something cool/cold will hurt me.  I seem to be experiencing some hair loss this time.  I am losing quite a bit in the shower when I wash my hair.  I am thankful that I have a lot of hair, because it will hopefully be a while before it’s showing and I feel like I have to do something about it.  (Head shaving party?!)  It’s possible it will just thin some, so I’m not jumping the gun on this one.  But I’m watching vigilantly, lest I be that in denial cancer patient, walking around with patchy mange.  Also?  Why my head hair??  I notice my leg hair hasn’t exactly taken a vacation.  Whatever, body. 

Vectibix is another chemo drug administered via IV.  This drug causes a terrible rash.  I seem to be getting it mildly on my face and chest, but it’s primarily on my scalp.  It itches and is a bit painful.  So far, not anything I can’t ignore, but I wonder how much worse it will get.  It will be really awesome when I have to shave my head and we can then see it’s covered in a horrible rash.   Someone, please start scoping out wigs.  Something with bangs, perhaps?

Finally, we have good old 5-FU.  I hate this drug.  FU indeed.  They give me a bolus which is a syringe of it, so it comes on hard and fast, and then they hook me up to the Wonder Woman fanny pack.  I cart this large and in charge pack around everywhere I go for 46 hours following hook-up.  It’s cumbersome and makes a clicking noise about every 30 seconds.  It is always a welcome relief to get it disconnected.  But on Wednesday, when I’m disconnected, that is when the side effects really start getting bad.  Nausea, fatigue, digestive issues, heartburn.  It’s not usually all of those, but those are the ones that have given me the most trouble.  They last well into the weekend.  Sunday is usually the day that things start looking up. 

This past time was pretty rough.  The nausea really gave me a hard time.  I have a game plan for dealing with it this time, so hopefully we can get in front of it and head it off for at least a while.  If I could get one or two more days of feeling ok before the really difficult days set in, I would be very grateful. 

Generally, with chemo, the drugs have a compound effect, meaning the side effects they cause get worse each time.  But sometimes, certain effects, your body has a way of adjusting to them and they get better.  I’m hoping and praying that we don’t have all of these side effects in increasing levels each time.  But I also know that whatever comes, I am capable of dealing with it.  Prayer, thankfulness, attentive medical staff, and unflagging support, assistance and encouragement from #teamjessi is all critical and effective.  These are the tools by which cancer and chemo are overcome.   

My attitude is currently ok.  I’m having a little anxiety and discouragement facing tomorrow.  I have some prayer and some other attitude adjustment activities on the schedule for today.  Each time, so far, I have been able to rally, able to see the hope, see the need to hold my head up high, and face it square on, get down to business and get it done.  Sometimes, it takes more effort.  Or more God. 

Knowing how much people care has this magical effect on me, too.  When it is clear that someone has thought about my current situation and reaches out and does something in an effort to help, it’s truly incredible and I have moments where I think that maybe one of the reasons I am going through this really difficult time is that I never would have understood the depths of care some of the people in my life have for me.  My mom, cooking up a storm two weeks ago so that I would have organic, healthy, but comforting meals all ready to go when I didn’t feel like cooking.  A friend continually asking me what I need and figuring out that a massage gift card was the sweetest gift I could have received.  Another friend who fights hellish traffic every Tuesday to bring my family a gourmet meal from another friend who has agreed to provide it each week as long as we need it.  A friend so kind, she supplied me with many needed facial products to combat the acne/rash.  A group of friends, most of whom I have never met in real life, chose Pittsburgh for their annual gathering – I assume partly because they are dying to see America’s Most Livable City!  But also partly because I’m here.  I can’t wait to see these ladies!  Friends checking in, praying daily, offering help with Cass – heartwarming, life giving.  

It doesn’t change anything about how tough it is to get through this.  But it makes all the difference.  It balances out the pain and the fear and the anxiety with love.  LOVE is bigger.       

 

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Eucharisteo

So I’m reading this book on being thankful.  I was led down this path two ways.  One is that the magnificent Tim Keller mentions being thankful as part of the way you respond to adversity in an effective, Christ-like way. Ever since I read that in his book Walking with God through Pain and Suffering, it has stuck with me. Thanking God even when things are not going well. Being thankful in the midst of scary and painful circumstances. How can this be what He expects of us?

Then, Lisa Slayton, my trusty mentor, gave me a very interesting book – it is called One Thousand Gifts.
The author is an interesting person. She writes with peculiar cadence and word choices. She is a farmer, or maybe more accurately a farmer’s wife and mother of six kiddos, and writes like she has at least a PhD. Maybe she does. But her simple life and complex thoughts are unexpectedly divine.  I’ve seen a clip of her speaking, and she dresses and talks like an NYC poet. Such an interesting woman!  Ann Voskamp.
Early in life, she and her family experience the most horrific of tragedies. Her young sister was very accidentally killed by an oncoming delivery truck driver. They all saw it happen. Devastating. Tragic. Gruesome.
When you go through something like that, you pretty much either shut down, cross your arms and turn away from God. Or you run toward him desperately, knowing that He is the only possible thing that could ever make you in anyway OK again.
She initially chose the former, quietly, humbly.  Confused, desperately disappointed.  She continued church going but closed off part of herself.  She settled into a longtime depression of sorts.  She didn’t become an atheist or anything – she just stopped trusting God and stopped being engaged with Him.
The book talks about how she came across this idea of Eucharisteo, the table of Thanksgiving.  As long as there is grace, thanks is possible, and so joy is possible.  She met someone who was thankful IN ALL CIRCUMSTANCES (and he’d been through some doozies.)
She knows how Jesus thanks God before he asks him to do stuff. She notes that thanksgiving always precedes the miracle.
She thinks hard on this Eucharisteo.    She considers how even our saving by Christ must include gratitude.  How else could we accept the gift of salvation but with gratitude? Gratitude is the evidence and manifestation of our acceptance of his extended grace.
So she begins the list. A list of things she is thankful for. Little things, big things. God’s grace and the beauty of morning sunlight.  Her husband’s embrace.  Her children’s bare feet.  Apparently there is a workbook that goes along with this book. I don’t have it. But I got the idea that I should probably start making a list, too. The title of the book is One Thousand Gifts. So I guess that is what we’re shooting for, here. So far, I’m up to about 200. I forget things that should be obvious. I think I’ve written down some already, and realize I haven’t. I’ve written some things twice, I think. But here is the list I have so far. Many of you reading this will find your names on it. And if you don’t, it’s probably because my brain is addled from chemo and pain medication.  it’s far from complete, so your name may well be popping up soon.
I’m only about a third of the way through the book. And I have not magically transformed into a naturally thankful person. But I do find myself taking note of blessings that I took for granted before. Little things that people do or that spring up before me, source unknown.  I’m more aware, and more willing to give thanks even if I am not feeling especially thankful. Sometimes, the very act of thanking prompts those feelings of gratitude. There is some special magic in that. I don’t have it all figured it out. But I think I’m on the right track.
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Surgery 2.0: The play by play

Cancer is an adventure and one part of that adventure for many cancer patients is surgery.  Would you like a long, detailed update about my life since August 31st?  Ok!  Here we go.

Well, it’s been two weeks since I had surgery to remove half my liver (which, I’m told is almost totally grown back already!) and my entire gall bladder. Forgive me for the delay, but between the anesthesia, the pain and the side effects of the pain medication, it would have been a bad idea.  For example, a few days ago, I went to text a friend (Kelly Cooke) and realized that I had texted her in the middle of the night from the hospital “These pain meds are awesome.”  I’m not sure if it’s funnier that I wrote that or that she totally ignored it.

Surgery was…surgery.  I’ll give you some details because sometimes people get sent to my page because they have a similar diagnosis and they Google what to expect.

We arrived at the hospital at 4:45am.  It is always interesting to see the groupings of people there for early morning procedures.  Some people come with just one other person and are pretty quiet and grim-faced.  Others are calm or upbeat (probably the lucky laproscopic patients!)  I’ve noticed that Latino people with an older relative going in for surgery come out in droves – the whole family – and are pretty lively.  I’m happy to report I’ve never seen anyone in the early morning surgery waiting area alone.  That would break my heart.

My trusty driver and husband had his coffee, his newspaper and his laptop at the ready.  Shortly after we arrived, my lovely, loyal, generous friend, Jennifer showed up.  You really love someone if you wake up at 4am for them.  That’s an official friendship measurement unit of some kind.  We only got to visit a moment before they took me back, had me undress and stuck me with a bunch of needles attached to little tubes.  Kevin was allowed to come back and sit with me.  They started giving me the good stuff – the medicines that cause me to make every observation out loud and discuss such obscure topics as Fraggle Rock.  I get a little paranoid “Is that guy REALLY a doctor?” and a little silly “I can see that lady’s butt!”  And then they put the nerve blocks in and I get grouchy because that hurts, dude.  But then it doesn’t.  And things get dreamy, and off I go to surgeryland.  I have no memory between that and arriving on my room floor to see the friendly faces of Kevin, Jennifer, my mother-in-law and Kait.  Apparently my surgery and post-op recovery took about twice as long as expected, so everyone had been riding an emotional roller coaster.  That is the one time that being the patient is actually totally, inarguably easier than being the loved one.  Not that being the loved one in these situations is a piece of cake by any means.  Your friends and relatives take this journey with you, They drive you places, they help you organize your medication, they watch the needles go in, they hear you barf through the bathroom door, they hold your hand while you fight a battle of heartburn or nausea or aches and pains silently while your 6 year old tells you some rambling tale from the playground.  They are definitely in it with you and I would never say it’s easy or less scary than experiencing it yourself.  Love is like that – you sometimes fully care MORE about someone else than you do yourself.  But no one else actually feels the physical pain or ponders their own mortality in the immediate way life threatening illnesses and treatments cause one to, or puts pressure on themselves for every factor that might make a difference – take this supplement, don’t eat that pesticide-laden nectarine, get 5,000 units of turmeric into your body today or else!!  Being the patient is a solitary endeavor at times, even in the most supportive of circles.

But on surgery day, you, the patient, are in lala land and the fear, the waiting, the not knowing…it’s all placed squarely on them.  Them.  Your loved ones.  They walk with you, carry you, comfort you, spur you on, buy you nice stuff, feed you good food, clean around you, make you laugh, and run ahead of you on the path, clearing the way of everything but the largest, immovable boulders – they are in it with you.  But when you get wheeled down the hall on that gurney and you fade into unconsciousness, it is they who are left alone.

So, after hours of waiting and praying and hand-wringing, I am wheeled to my room. My crew awaits.  I make a few comments about how between Kevin’s beard and Jennifer’s stylish hat, they look like an Amish version of American Gothic, and I manage to wrestle my phone from Kevin and take a few pictures.

 

That day and the next are mostly a blur.  I remember two very good nurses, Alisha and Justin, who took excellent care of me.  Justin and I became very close because our first two experiences together were removing my catheter (is there much out there that is more personal?) and the tape holding it tightly to my thigh.  After about five minutes of his gently prying off that damned tape I looked at him and said “It’s like the world’s slowest Brazilian wax.”  He roared with laughter and we were best friends after that.  Even when he wasn’t assigned to me, he came by to check on me.  Good nurses are seriously the greatest people.  I didn’t have any bad nurses, per se, but the ones that clearly care and try to get what you need as quickly as possible, and treat you well are just so great.  It took everything I had to not ask Alisha and Justin to friend me on Facebook.  I know I’m just another patient, but I felt special because they made me feel special. Well, that’s not entirely true – I kind of always feel a little bit special.  🙂  But they made me feel like we had a connection, which is probably just them doing their jobs very well.

The first two days, I was on a liquid diet.  That is fine – I have no problem with those kind of restrictions.  They exist so you don’t send a pork chop barreling down your tender, healing insides.  Here is what I have a problem with, though.  You have just had surgery. You haven’t eaten real food in days and what do they bring you?  Processed junk.  Off brand Jello, which is simply corn syrup, which actual Jello also is, only in the case of the Yum Yum Jel Jel or whatever it’s called, the corn syrup is…syrupyer?  Beef broth (blech!) made out of a boxed powder – more sodium than you can shake a stick at.  Pudding (ok, I’ll admit, vanilla pudding, junk filled as it is, is a treat I let myself have about once a year.)  But still!  Sugar, and a list of at least 12 unpronounceable fake chemical ingredients.  Does it really seem like this is what our bodies need then?  Don’t we need nourishment?  Vitamins?  Minerals?  Nutritional TLC?  I barely ate anything because I just couldn’t imagine how it could possibly be any good for me.  (Hey-ay – guess who is down a dress size?!  Not the best way to lose a few, but I’ll take it.) We moved on to “soft foods” which included mashed potatoes and an egg sandwich.  That is what I ate for two days because they seemed the closest to actual food out of my options.  Let’s look the other way on the probability that the taters came out of a box.

I think it would be awesome to really revamp what hospitals are doing with food for patients.  To really think through what is appropriate, nutrient-rich and promotes healing.  What a cool job that would be.  Ahem, Natalie Ilkin Coale.  Just sayin’.

Visitors were probably the highlight of my experience besides, of course, doctor-ordered pain medication that makes you just not care about anything at all – my blood pressure never ventured past 120/80 during my entire visit.  I had a few visitors.  More like, a bunch.  It was so nice to see those who came by.  I fell asleep during half of the visits and have fuzzy memories of others.  Some visits were planned, some pleasant surprises – Jim Lokay gets the award for “furthest travels” and we will just pretend he didn’t come home for some fancy event, and not solely to see his ailing high school musical partner in crime.

I got to be a guinea pig for some nursing students.  And let me tell you, being a student’s first ever laxative suppository patient is a wild ride.  A ride you wish you weren’t tall enough for, where a balding, grumpy, middle aged instructor stands by and utters the phrase “Insert, insert, insert…and…stop!” to a trembling, stuttering blonde girl who probably wished she could click her heels and head back to Kansas where no one needs suppositories because of all that corn they eat.  That was a glamorous moment.  Believe me.

My abdomen has never been particularly attractive.  I carry my weight there and have always been kind of puffy around the middle.  Even as a teenager, when your body is about as good as it’s going to get, I never donned a bikini.  Well, even if they invent the actual magic bullet of weight loss and I get tight like Jillian Michaels, there will still not be a bikini in my future.  You guys, I kind of look like a shark bit me!  I have this incision that will eventually be a scar from my sternum, heading down a few inches, and then sweeping out to almost my hip on my right side.  The bruising and swelling make it look like I’ve been a victim of a mob beating.  It’s currently turning from that deep blue/black and purple to a sickly yellow with some spotty red like I have a bunch of hickeys on my belly.  I assure you, I do not.  When the bruises fade away, I’ll have a deep red scar that will probably change to white, and one day, when this is all behind us, make a very good story.  Ready for pics???

 

The only other noteworthy thing that happened at the hospital is this:  I had a drainage container that they call “the grenade” that is a clear tube inserted in your side, going deep into your belly where all the oozy, bloody junk gathers.  The grenade sucks it out.  Oof.  That thing was gross.  A clear grenade shaped ball dangling from a hole they made in your side.  They were nice enough to pin it to my gown so it didn’t drag on the floor when I went to the bathroom.  The nurse would drain it every few hours and it changed eventually from a dark red to a light red.  The disturbing thing is that they would drain it into a plastic cup like out of which you might drink, say, a spiked punch or cheap red wine at a picnic.  And then they would stand there and talk to me, holding it casually.  I almost vomited each time, because I worried that they would forget what they were doing and take a swig.  Arghghghgh!!!

Finally, the day of my discharge, the docs came through and said it was time to take out the grenade.  I had been briefed on this by a kind surgeon and he strongly recommended I up my pain meds before removal because it is “quite painful.”  The docs came through early that day and I had requested my first pain meds of the day, but they had not yet been administered.  The nice surgeon said “We’ll come back in a half hour, ok?”  I smiled gratefully and was about to thank him when the obnoxious PA with him ROLLED HER EYES and said “It doesn’t hurt that much.”

Look, Britney.  First of all, Britney?  Lovely name, but I just can’t handle the idea of someone young enough to have that name involved in life or death decisions about me.  Maybe the life or death decisions of a hamster or reptile no one cares about.  But Britneys may not operate yet.  See me in 2020 and we’ll see how it sounds then.  Secondly, SHUT UP.  I just had my whole body forcibly ripped open.  I have not complained one single time, unlike my neighbor down the hall who screams all day and calls all of the nurses “jackasses.”  I am a pretty docile patient.  Third, when A SURGEON tells you something will be QUITE PAINFUL, you freaking listen.  So shush.  And come back later, after I get my pain meds and I am less likely to smack you when this thing comes out.  I narrowed my eyes and said “That’s not what I heard from the doctor.”  He smiled and said it was no problem and they would be back.  So, of course, a half hour later, my door opens and here is Britney, by herself.  Sigh.  So I endured what probably could have been a kinder, gentler procedure by a physician’s assistant that I just annoyed.  So, new levels of pain were experienced for about 45 seconds.  Oh well.  I’ll consider it a teachable moment (be nice to the PAs even if they are little brats) and a character building exercise, which is the only benefit of physical pain.

I have enjoyed convalescing at home, receiving visitors, incredibly thoughtful packages and cards and catching up on reading and phone calls and napping.  You really can’t rush your liver healing, so I’ve had to go against my instincts to “bounce back” and just lean into the healing and rest.

Today was my first doctor’s appointment.  It was great to see my oncologist.  He has just the right mix of cautious optimism, humor, hope and diligence.  He talks about me to other doctors with pride.  He believes in me, my strong spirit and iron will.  He says I’m tough and laughs when I joke.  I like it that he gets me.  It is so important to like your oncologist.

He says we start chemo in two weeks.  I plan on fully enjoying the rest of my chemo hiatus.  Thanks for reading.  Until next time…

 

 

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Here We Go! Surgery Monday.

Tomorrow night or Monday morning, however you think of 3am, I will get up, shower with this weird stinky pink antibacterial soap, leave the house around 4am and arrive at the hospital to have one and a half significant organs removed. 

My life is so weird. 

I remember, recently upon getting this diagnosis, saying to Kevin “Well, it’s never going to be normal again.”  These are true words.  But they are not bad words. 

When I said “normal” what I meant was the idea of waking up in the morning and going through my day without worrying about something major and specific.  Sure, we all worry our child will run into traffic or that argument with a friend won’t get resolved.  But there is this “normal” kind of living that you do when you feel you have control.  You have a general idea of how the day, the week, the month will go.  You confidently plan activities for next summer without wondering if you will be healthy, functional, alive?  You have a sense that all is well, nothing terrible is about to happen.  Life feels pretty predictable. 

When you have cancer, or had cancer that might come back, you live with this sense of dread.  Is it coming back?  Will it be worse?  Can I beat it again?  Cancer is so disruptive and unpredictable.  Do you know how many tests they do?  SO many!  And one wrong number – one field in a huge spreadsheet, can throw everything off.  And every single thing you do (port placement, chemo, surgery, doc appointments) requires so many things to go just so.  And organizing your schedule around it while trying to minimize the impact on everyone around you is just so incredibly difficult and stressful.  Cancer makes life so darned unpredictable. 

But the truth is that none of our lives are predictable and the control we think we have, well, a lot of it is an illusion.  Cancer (and other hardships) just pull back the curtain a little bit. 

I just heard from a friend that her good friend’s husband passed away very suddenly from a heart attack.  No warning.  He leaves behind a stricken wife and a handful of stunned children.  It sounds like no one saw this coming.  Getting the rug pulled out from under you.  It feels so unfair and so wrong.  We turn away from God entirely, or, toward God in rage, in total despair.  

How. Could. You?  
Why us?  Why this?  Why now?  We rattle off our good deeds and offer them up feebly.  Wasn’t this enough?  What did we do to deserve this?  Is it because of that terrible thought I had?  That argument I didn’t resolve?  Was I not grateful enough?  Selfless enough?  I didn’t pray enough, did I?

But God is not much of a transactional God.  There was one significant transaction to wipe out the rest.  We sin.  Jesus went to the cross to wipe out all of those sins for those who believe.  They are gone.  Erased.  You don’t have to pay for them again.  Scripture makes this clear.  God does not punish us for a debt that has already been paid in full.  He is not up there in the clouds doling out punishments to smugly teach us lessons.  God is not mean. 

So, what is He up to?  Well, I wish I could explain it in a way that made everyone feel better but I can’t. I have a few things to share that might help a few people a little bit. 

Grief is real and big and purposeful.  One must walk through grief.  There is something about grief that changes us, makes us deeper and realer and more whole, eventually.  Even though it feels as though your very heart and humanity have been forcibly taken from you.  But grief is functional, and it must be experienced.  No shortcuts.  I believe this may be part of why there are not easy answers.  We simply must  move forward through the very human experience of grief.  It equips us.  Strengthens us.  Makes us softer, wholer and better somehow. 

No way over, under or around.  Just…through.  However, there are some things to consider as one walks through grief, that I believe are useful.

We don’t know what God is up to in the short term.  We just don’t.  Romans says “Do not conform any longer to the patterns of this world but be transformed by the renewing of your mind.  THEN (emphasis mine) you will be able to test and approve God’s will.  His good, pleasing and perfect will.”  Ok, so what this means, I think, is that once we ditch our worldly ways of thinking and doing, we are much better at seeing what God is up to.  But most of us are a long way off – still early on that journey of getting our minds renewed.  But.  If you really want to understand what God is up to, focus on Him and His ways.  Seek to understand His character and how He moves.  If you’re watching trashy reality shows and reading crappy romance novels and you’ve let yourself get brainwashed into expecting certain kinds of neatly wrapped up happy endings, you’re on the wrong track.  I love movies and books and all kinds of entertainment – I just have to make sure I don’t let those fairy tales strongly guide my expectations and how I think life works.  In the Hallmark movie, they always get together in the end, the kid gets rescued and they find a cure before it’s too late.  Not so, at least not always, with life.  In the meantime, while still fledglings at the whole figuring out God’s will thing, we simply have to trust Him.  I pray each night that I could somehow “Trust Him more each day.”

One path to trusting God more is thankfulness.  Grief and gratitude (for the grieving) or fear and gratitude (for the worried) seem like unlikely neighbors.  But they can be.  I can tell you with deep confidence that finding something to be grateful for, even the smallest thing to start with, changes your mindset.  Gratitude begets more gratitude.  It is easier to trust God when we intentionally reflect on all of the blessings we have received.  It seems weird, but I have worked myself into a near gleeful frenzy when I’ve started thanking God for everything I could think of.  Sometimes it happens differently.  For example, I love receiving thoughtful gifts, especially unexpected ones.  When I come home to a box or two on my doorstep addressed to me, and I tear through them to find fun Wonder Woman accessories or soothing spa products or a gift card somewhere fancy I’d never buy for myself, even if I’m worried about test results or feeling discouraged, those gifts can just lift me out of my funk and remind me of how much I’m loved and how God cares for me through other people and how thoughtful and generous people can be, how fun can burst out of nowhere, and how incredible and wonderful my life is, and all of a sudden this Stage 4 cancer patient feels on top of the world.  Because I feel thankful.  Gratitude lifts us up, toward God.   

God is in it for the long game.  What happens short term is PART of the bigger picture, but you may not see or understand how it all fits in.  Scripture clearly tells us that He works ALL THINGS for OUR GOOD if we love Him.  I’ve seen some of that.  There are incredible examples of God using evil for good.  Tim Keller says that God gives Satan (and us, our bad choices, etc) just enough rope to hang himself with.  I love that.  Think of Job.  All was taken from him.  He wrestled with it, debated with his friends, argued, even with God Himself.  God never gives Job the WHY but he does restore him and bless him.  This story has impacted millions of people for thousands of years.  Many a sufferer has gone to that Old Testament book in a desperate state of grief, anger or despair and said “OK, help me.” 

Imagine if my story, of struggling with cancer, made it into the volumes of history because I had a willingness to trust God and not a need to know why.  What if people, years from now, after the zombie apocalypse, went to this blog to read about how Jessi Marsh of ye old Monroeville, handled her suffering?  They probably won’t, and that’s ok – I don’t aspire to be Job.  I’d rather be known for doing something cool like inventing a teacup pig that would actually stay tiny so you could carry a wee little pig around with you wherever you go and let him out to run around the coffee table and teach him little tricks!  Heeeheeeee!  Or, you know, like, ending homelessness, than being known for suffering well (wouldn’t we all??)  But our stories, how we suffer, are important.  I hope to be authentic, to share my moments of doubt and fear (had a BIG one last week when an EKG came back abnormal.)  And share my sincere, honest hope in Christ.  My belief that God is WAY bigger than all of this but personal enough to look at me with love and care when I hurt and when I’m scared.  He reminds me that there are major challenges ahead, scary moments, physical pain, uncertainty, sadness, loss and strife.  But it’s my path, for my adventure.  And he is the activities director, the captain of the boat, the pilot of the plane, my doctor, my lawyer, my Sherpa, my advisor, my battle strategist and my friend. 

I love in The Lion, The Witch and the Wardrobe, which Cass and I are currently reading, when the children ask the beaver if Aslan, the lion is safe.  The beaver says,  “‘Course he’s not safe.  But he is good.”

That’s God.  Not necessarily safe.  But definitely good. 

So, that’s how I’m approaching this surgery.  It’s an adventure.  I hope it all goes very smoothly but it might not – but I will make every effort to approach any bumps in the road with the mindset that God is always good.  He loves me more than I could dream, and He’s got an incredible story in mind for me that is slowly being revealed.              

 

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The case for over-sharing

Last week, Mark “Facebook” Zuckerberg announced the happy news that his wife is pregnant, along with the normally private information that the couple had endured multiple miscarriages.  With that announcement came a flood of empathy and support and appreciation.

Sharing certain things is difficult.  Especially when the news is so closely related to your body.  Some things are so personal that many people receive difficult health news and immediately make the decision to keep it private. I completely understand this.  In early 2009, during my pregnancy with Cassidy, I was diagnosed with gestational diabetes.  At the time, my response to this news, in terms of emotion, was SHAME.  I felt I had failed my little fetus.  I completely took responsibility – one of the many downsides to being natured and nurtured into leadership tendencies is that you tend to take responsibility for just about everything.  I was certain I had eaten too much Goodfella’s Pizza in college (holla, Bobcats!) and I was paying for it dearly.  Whenever I thought of it – pretty much constantly because I had to test my blood sugar 4 times a day – I would shut my eyes and bow my head in shame and think “it’s my fault.”  So, my shame led me to what we have constructed as an acceptable euphemism: privacy.  Hey, there is nothing innately wrong with being private – but we would do well to examine our reasons for desiring privacy.  In my case, it was because I was totally embarrassed and ashamed.  I assumed that anyone I told would nod knowingly and judgingly and condemn me for every carb they had ever witnessed me enjoy.  I shielded myself from that by telling very few people about my diagnosis.  As time went on and keeping it secret became cumbersome, I found a level of comfort and reduction of shame through the sisterhood I found in online communities of ladies with the same issue.  That, along with my natural extroversion, allowed the news to creep out timidly.  Typically I would follow the bomb drop with statistics about how common it is and how even skinny people get it and how well I was managing it through a heroically strict diet.  I steered people toward admiring me for eschewing sugar during pregnancy, desperately managing their ideas about me to protect myself from the judgment I anticipated. 

Years later, with that far in the rear view mirror, I talk easily about gestational diabetes.  I have grown in a number of ways that allow me to feel less concerned about that judgment, less bothered by those kinds of worries.  I am a bit gentler with myself and others – by the way, I have found that the gentler we are we ourselves, the gentler we can be with others – and I have seen plenty of bad things happen to good people, both as a result of their own choices and a result of the strange non-formulaic, apparently senseless ways of this world.  Grace is in order in both cases.  And if you don’t want to give me grace and prefer to judge me, I can see now that is way more about you than it is about me.  You and God will have to work that out, and it will probably be quite beautiful when you get around to it. 

I share about cancer freely.  I am sure some people have thought what I might have done to give myself cancer.  We think that way if we are afraid and want to feel sure it won’t happen to us.  The person with lung cancer smoked – whew, that won’t happen to non-smokers, so it’s ok.  The child drowned because the mom let the 10 year old babysit -whew, I would NEVER do that, so it’s ok.  Apparently senseless, non “obvious fault” tragedy is so much scarier.  The bowling ball rolled out the window and hit him on the head and killed him??  He was just WALKING ALONG?  Wait, I do that every day!  That might happen to me!!!!  Arghghghgh!  I also know some people don’t think like that at all.  Naturally empathetic people just care.  They just want to care for and comfort you.  They don’t care if you have HIV because you had unprotected sex or Hep C because you used drugs.  They just feel for you. 

That fear of judgment isn’t the only thing that prevents us from sharing.  Some worry that others will see them as weak.  Many people confide in me these days and a friend recently shared a cancer diagnosis.  This person didn’t want to be seen as incapable of doing their job.  Another person in a similar situation didn’t want the fuss and attention.  Yet another person didn’t want his family to worry.  I do understand these issues.  But I’m here to tell you there is something else to consider. 

My cousin recently called to tell me about how much he enjoyed a recent event where military and other people shared stories of overcoming insurmountable odds and thriving after experiencing trauma.  They did so with grace and humor.  It clearly inspired the audience deeply.  Those people chose to overcome their fear and value of privacy for the purpose of encouraging others.  Everyone is going through something.  And most of our world’s big problems (divorce, death of a loved one, a scary diagnosis, severe injury, intense failure) feel huge and solitary.  We feel alone in our situation.  Until someone else bravely shares.  Our tight, closed, scared selves relax a tiny bit and we hopefully whisper “You, too?” 

Lost babies is one of the most taboo subjects around.  I hear there is an underground network of people who privately rush to the sides of the recently bereaved.  I am thankful to not need admission to that club of support, but I guarantee you, there is love to be found there that exists no place else.  I know Mark Zuckerberg isn’t everyone’s favorite visionary.  But his vision is clear – that social networks operate to bring people together and inspire openness and collaboration and progress.  He took it straight to the heart with this one and I’m joyful on behalf of those who have felt they were required to grieve privately.  Many will choose the same quiet grief, even now that the door has been blown open.  But those who have longed for a bigger space to walk through their sorrows – Mr. Zuckerberg has knocked down some walls, put in a coffee shop and installed Wi-Fi.  He has invited you to join him in that space. 

My hope is that my decision to share openly about cancer has made it a little easier for someone else.  I share to create a bigger space, to make more room.  You can totally hide by yourself in the dark and deal with it on your own.  I judge ye not.  But if you want to come on out, there is plenty of room.  And pizza.  Even though I only eat that very occasionally now because it causes cancer.  Just kidding.  Like 97% kidding.  It’s actually aspartame.  Or Kenny G. 

 

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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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Our downfall: ingratitude

I can honestly report to you that I am doing OK. I do not feel afraid right now.  Something has been allowing me to live above my circumstances. Allowing me to live up higher and float slightly above the reality we face.  It’s not illegal drugs 🙂 or tired cliches of God not giving me more than I can handle.  It’s not a unicorn farting sparkly fairy dust or a mantra.  

It’s gratitude.  My readings and listenings and thinkings and prayings have led me to a special place of thanks.  I’m grateful.  For my life so far.  My family.  My friends. My job. The love of many.  Everything is a gift.  I’m reading this cool book that is right in line with this.  It’s called One Thousand Gifts.  (Score another one for my mentor, Lisa.) It’s encouraged me in this thinking.  
Our problem is entitlement, and not just the millenials.  All of us.  Between Hollywood, fairytales, and everybody’s Facebook highlight reel, we think we deserve a loving partner, our health, freedom from pain, a dog that doesn’t chew the couch, a DVR with endless memory, perky boobs, a sweet ride, a head full of hair and perfectly above average children.  
That’s what seems “normal” so we think we deserve at least that.  So and so has it, why can’t I?  
There are a few problems with this thinking:
-people have more problems than you think they do. Believe me, I know. Because when you have my kind of problems, people reach out and tell you their problems.  Which I love and see as a gift.  Seriously.  People have illnesses they don’t want to tell you about, pain that is difficult to share, shame that requires medication and worries that rattle them to the core.  But their family photos look sunny and fun, their smile is firmly plastered and they are deeply committed to making you believe everything is fine.  (Unsolicited advice:  Be a safe haven instead of a competitor.) 
-most of the world has nothing close to those things you think you require in order to be ok. Much of the world is inhabited by people who are not sure where their next meal is coming from, if their sister will die during childbirth, if a bomb will destroy their home, if the water is safe to drink or if an anaconda will eat them. (The last one is sort of made up.) 
If you’re reading this, you’re one of the lucky ones.  Put here by God and your ancestors hard work and decent genes.  Forget about the facelift and the $400 sneakers (unless you can have them AND truly be thankful.  Which, I think, is hard.) 

-if you feel entitled to those things, you can’t appreciate them.  And you’re missing so much!  Look around your house…The one that isn’t big enough or nice enough.  Can you give thanks for it? Try.  Your kids/spouse/brother are crazy.  If only they would just…  Stop.  Look at them.  They are so great.  Just give thanks for them. 

-perfect isn’t normal.  You know what is normal?  Some mix of monotony, love, tragic loss, fun, boredom, physical pain, pleasant enjoyment, white hot fear, depression, hilarity, relief, dullness, excitement, betrayal, surprise, anger, healing.  That’s a lot more normal than a perfect family that never has any problems.   How about we expect to have problems, small and occasionally big, and learn to respond with a thankful heart – yes, crying, screaming and such is fine for a time.  We all have to experience difficult emotions one way or another.  But there is great comfort and opportunity on the other side of that wall of fear you think you can’t get over.  There is a ladder nearby.  It is called Gratitude.

When you begin to see everything as a gift, your perspective changes.  Realizing you’ve been acting like you deserve something is a wake up call.  You’ll think “why?”  Why have you acted this way?  This entitlement?  Because you do good stuff sometimes or try to do less bad stuff, or you go to church or don’t swear or something?  That’s very common and understandable but let’s be real – it’s bad theology and simply not how life works.  Fred Rogers died of stomach cancer.  Shit happens.  To really great people.  

But there is so much hope in letting go of the entitlement. 

Your heart grows and your brain relaxes and you unclench your fists and you begin to take in the scenery a little better.  Set backs are less devastating, because…look at all of these gifts!  Maybe you didn’t get the Malibu Barbie, but there’s a freaking Cabbage Patch Kid over there!

Yes, there is cancer.  That nasty thing.  But also…

There is a friend who would move mountains.  A mom and dad at the ready.  There’s a good job.  A strong husband.  There’s your aunt who really loves you.  There’s a cold drink.  A warm bed.  A fluffy cat.  Your little girl with mischief in her eye and love in her heart.  There’s The Golden Girls when you can’t sleep.  

And if you see that there is a gift giver and He is the mighty captain of this ship, and He is big and good and generous and very skilled at steering.  Well, then you can enjoy the gifts and enjoy the ride.