Tag: port

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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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RIP, Mort the Port

I spent the past 17 months with a compass sized contraption in my chest.  It looks like this:

That long tail thing that goes into the jugular vein freaked me out a little.  It hurt a lot when it was installed and it took some time to get used to the idea.  But I understood that it would be my chemo delivery system and I should make peace with him.  So I named him Mort the Port and considered him an ally.
I recently got the news that my oncologist doesn’t think I’ll need him anymore.  This is huge.  The idea that your conservative, careful cancer doctor doesn’t think you will need any more chemo for the foreseeable future is a big deal.  A break in the clouds.  A bright sunbeam of happiness!  
So two days ago, I went to the hospital.  And I looked like this:
And then they put me out with some heavy drugs and scraped out Mort.  So I liked like this:
Cute, huh??  So Kevin took me home and let me rest with a cat on me, like this:
I got a little more energy from snuggling with this little bug:
I got brave and took off the bandages yesterday.  Eeeek:
It’s so swollen, it looks and feels like Mort is still in there.  But I know he’s not.  It’s a new era in my journey.  So many prayers have been answered.  Since we got that awful news, literally from that moment, everything, while difficult and painful at times, has gone with perfect precision.  This blessing does not escape me.  I am so grateful.  
I met a Brazillian faith healer by a river in Oregon, who talked to me half in Portugese and half in English. (Yes, I know this sounds made up.  It’s not.)  So I missed a lot of what she said. And she said a lot of strange things to me (including the f-word every sentence or two and that dogs cure cancer) but she grabbed my hands and urged me to trust in my having been healed by God and to be fearless.  Interestingly, the same day, I went to this bakery and had a cookie so delicious I’ll never forget it.  
Live fearlessly, my friends.  

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Learning from cancer

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

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

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

You’ll waste your cancer if…

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

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

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

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

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Mort the Port

Well, my friend/foe Mort the port has been installed.  He’s on my left side a couple inches below my collarbone, under the skin.  That general region is pretty sore, like a dislocated shoulder or something.  This is where they will access my circulatory system for my IV chemo.  They do this because veins get sick of being stuck and they can stop cooperating, which, I’m told is kind of terrible.  Hence, Mort.
I got some truly excellent news yesterday.  My prayer was answered and I’m going to be able to take one of my cancer drugs orally.  The original plan was to give me one IV drug at the cancer treatment center every two weeks, then send me home with a fanny pack attached to my port via tubes and wires, to deliver a kind of chemo.  For 48 hours.
Let back up for a second and talk about the fanny pack.  Umm.  Unless it’s 1991 and we’re at Kennywood, no.  Just no.  Also, I have a four year old.  She is already pissed that I can’t lift her up for three more weeks.  (After major abdominal surgery, for six weeks you can’t lift anything heavier than a gallon of milk.)  She also has to be careful around my incision – once she accidentally slapped me right in the belly.  I almost cried and she actually did because she felt so bad.  Now, with this possibility of the chemo-from-the-comfort-of-home fanny pack, the poor kiddo would have had to worry about getting caught in my spider web of chemo tubes for two days at a time.  So, instead (THANK YOU, Lord) I have to take a bunch of pills everyday.  I’m fine with that.  Now, I still have to go and get regular chemo at the treatment center but it’s only once every THREE weeks instead of every two.  And one final blessing to report:  I was going to have to pay a crazy amount in copays for this oral med every few weeks.  But somehow, they made it so it’s much less.  Cancer is expensive, folks.  So I’ll take it!
Mort and I are getting used to each other.  He’s a little pinchy.  But he’s going to be an ally in this battle.  So we’re going to be friends.  
Here I am pre and post Mort installation.