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…



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.  🙂     

Almost done

I have three days (six doses) of chemo pills left.  For some reason this last week has seemed very long.  I think I felt like being done with IV chemo meant I would be quickly feeling back to normal.  But I’m still taking chemo.  And I have had a few (wonderful) out of town guests.  Which has made me choose to stay up too late.  Like basically every night for the past week. I need to take better care of myself this week if I have a prayer of running this crazy 5k in a month.  It feels kind of impossible.  But that’s kind of why I decided to do it.  🙂

I had such a great week, though.  Catching up with some very significant people in my life.  I’m so happy and grateful to have gotten to spend the time with them.  Old friends are often the best friends.  Plus I got to act like a tourist in Pittsburgh.  

Nonprofits, homelessness, panhandlers, oh my.

This post isn’t about cancer, but approximately, in one way or another, the last 30 entries are, so just click backwards if that’s what you’re looking for.

The reason I’m writing this post is because I’m raising money for charity – it happens to be the charity I work for – as I train for the 5K of the Pittsburgh Marathon while fighting cancer and undergoing chemo. Sometimes, in working in the nonprofit world (as I have for 14 years) I come across some interesting, as well as (what feel, to me, like) strange questions and comments. I thought I would take the opportunity to address some of them since I have a nice, growing little audience here.


Do not do this. Typically, pan handlers are soliciting your hard earned money for drugs or alcohol. That is the honest truth. These people know about the nearby shelters and soup kitchen – which they may or may not need. They sometimes are part of larger, more sophisticated operation, too. You run the risk of funding a criminal operation or someone’s individual drug habit (as one former addict told me “you can be the person who gives them the money for the hit that kills them.” Think about THAT next time you want to hand someone a five dollar bill.) What to do instead? I recommend steering clear, just for safety reasons – you don’t want to get entangled in someone’s need for a drug fix or their mental illness if you aren’t experienced in relating to people who are living on the street. But if you feel confident engaging, just talk to them, offer to buy them a sandwich, give them a granola bar or a bottle of water. Let them know about local shelters, even though they probably already do. I think treating these people as human beings even though they might be trying to scam you is really important. As a side-note, I feel totally different about busking (someone playing music for money.) I almost always toss whatever is in my pocket in their container. Especially if it’s any good. Hey, at least they’re providing a service of some kind. But keep this in mind regarding pan handling and busking – these aren’t the official opinion of anyone but myself. BOTTOM LINE: If you want to give, give to a charity you trust that helps these people. That will do the MOST good.


This one is amazing to me. Occasionally people ask me if I get paid a salary. In my organization, we serve over 120,000 meals a year, assist over 1,000 individuals in need of food, shelter, counseling, education assistance, job training and mental health supports. This stuff does not get done when a couple of volunteers feel like showing up and giving a few hours of their time. While our volunteers who serve food, mentor clients and process our donations are invaluable and deeply appreciated, this is a 24-hour per day operation that requires professional counselors, case managers, pastors, experienced fundraisers, an accountant, an HR professional, administrative staff, maintenance staff, experienced front desk staff who put themselves at risk to keep the rest of us safe, chefs, child care providers to spend quality time with recently homeless children, a PR professional, a database manager, etc. It really is an involved operation to bring in enough revenue to keep the lights on and the cupboards full, to respond to emergencies, to welcome hungry, cold people day or night, to answer the phones, run the events that bring in needed revenue, fix the computers and help volunteers get plugged in. For the most part, these are professional individuals who could work elsewhere for more money. But we believe that this work is worth our full-time, fully comitted efforts. No one is getting rich here, believe me. But we care enough to do it anyway.

Sure, some of them are. But some of them are incredible, interesting, funny, smart, caring people who have sustained significant trauma and/or made some big mistakes. Let’s talk about how a homeless person gets to be homeless. Typically, people who end up homeless are either addicted to drugs and alcohol or are quite mentally ill. The mentally ill are people who are generally in need of medication, but for a variety of reasons cannot or do not maintain their medication schedule and cycle through a variety of mental struggles that lead to socially unacceptable behavior or debilitating fears and paranoia. They obviously are not able to maintain employment and housing and since there are almost no resources in institutional settings (i.e. being “committed”) they are often left to themselves once family cannot or will not care for them, and the individual may feel safest away from other people. They may stay in a rural area like a tent in the woods or they may end up in an urban setting under a bridge. They maintain survival that is acceptable to them. It is hard to reach these people and build trust, but sometimes we can and it’s a win if we can get them into temporary housing and eventually set up with (typically government provided) housing and care.

Addiction is a different story. Often, this begins early in life with trauma. Abuse, neglect, abandonment are major triggers. These inflict pain. Pain is avoided by dabbling in drugs and alcohol. Some people have a greater propensity toward addiction than others (I believe it’s always a choice to some degree, but that some have a bend toward uncontrollable addiction than others do) and down the rabbit hole, they go. Employment can be difficult to maintain. Eventually family relationships deteriorate and friendships do too, besides those “friendships” that center around the addiction. People can live this way for a surprisingly long time. When they do find their way to a place like Light of Life where they can be helped, they are taking a big step – choosing to make an effort at totally redefining their lives. These people are anything but lazy. They are beginning the hard work of dismantling a network of walls they’ve built in the name of self-preservation and tackling the mental, emotional and spiritual work needed for healing and restoration. It’s not easy. They are basically turning over control to people they don’t know, in the hopes we will lovingly walk them through what will be one of the most challenging things they will ever go through. Not only do we care for them – we care for their children in many cases. These are kids who have come home to Mom overdosing on the couch, or waiting for Dad to come home for three days.

It’s not easy work to walk alongside these men and women who are rebuilding their lives, and I give all the credit in the world to our staff who do this. I have done it myself in positions I have held in other organizations and it is challenging, rewarding but draining work. You give much of yourself each day and it can take a toll. Please pray for our staff who give so much of themselves over to our ministry.