Surgeon Says No

Today was the big meeting with the surgical oncologist at UMC.  I’d like to say that he had some brilliant plan and I was amazed by him…

Sorry.

The appointment started with a medical student asking about my patient history.  She was nice enough, but when you’re expecting some super awesome surgeon, it’s disappointing to be met with someone that almost forgets to do a physical assessment.  Much like others around me, she was impressed that I still work, am going to school and living as if I am healthy.  I keep trying to remind people that except for the mild back pain and the vomiting, I really am pretty healthy.  I wouldn’t know I had cancer had it not been found.

It took another twenty minutes or so before Dr. Ong made his entrance.  My first thoughts: where is the real doctor, this guy is just way too young to be a surgeon.  Seriously, Milo and I guesstimate that he was in his late thirties.  Given how well known he is and the fact he is a surgeon, this man is the Asian Doogie Howser.  It’s really odd to have a doctor not much older than you telling you what plans he has for your life.

Unfortunately, this one didn’t exactly have plans.  He told me he won’t do surgery; it would take away from the good quality of life I have right now.  He also said that he can’t predict how long I will live because cholangiocarcinoma doesn’t respond like other tumors.  He recommended bringing my case to their hepatobiliary cancer team and seeing if anyone else had any ideas on treatment options.  His final word was that he wouldn’t cut until it was necessary and that no surgeon was going to go after the tumors in my chest.  My tumors are a death sentence.

I was pretty devastated.

I’m still pretty devastated.

Milo and I are going to start working out what to do from here.  In two weeks we’ll know what the medical committee has to say about treatment options and prolonging my life.  I am trying not to give up hope, but I feel as if it’s all rather bleak right now.  I’m too late to be saved is something I hear a lot of.  If only it was a different type of tumor…

If only.

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Spinal Anatomy Lesson

Last Saturday at work, Dr. Scully happened to be the doctor on call and rounding on the surgical patients.  I was fortunate to have one of his partners’ patients, so I was able to talk to him.  The first thing he asked, “Did you get the MRI?”

When I told he I had, he finished his rounds and then took me over to a computer to look at my films.  He started with the thoracic region, which is the spine in the area of the chest/rib cage.  Nothing abnormal showed up on those scans, which made him pleased.  He then brought up the images of my lumbar region.  With a pen, he pointed out where the sacrum is –which I found a little annoying since I knew where the sacrum was!– and then counted up to the L3 (short for third lumbar vertebrae).

Now this is where I will teach you.  Below is a picture of a lumbar vertebra from two angles.  If you look at the axial/overhead view, you will see that vertebra look a little like a bumpy ring of sorts.  The bumpy parts have different names but whenever a patient has a laminectomy, they are working on those bumps.  The most prominent bumpy part is what people feel when they run their hands over a spine.  The bigger, denser part is known as the body.  It is the part that we can’t feel because it is inside our chest or abdomen depending on the section of spine we are talking about (our spine is divided into four parts: cervical in the neck; thoracic in the chest area; lumbar in the low back and sacrum or “tail bone”).  The gap between the bumps and the body is the spinal canal where our nerves and spinal fluid are housed.

Dr. Scully pointed to a glowing blob that appeared on the L3.  It was very prominent on the scan, even I noticed it, and Dr. Scully called it “worrisome.”  The tumor is on/in the body.  Dr. Scully cannot remove it with a posterior approach –or by simply opening my back and removing the offending piece of bone.  Instead, he would have to work with a general surgeon, open me with an anterior approach (cut open my stomach) and move all of my organs and my aorta out of his way.  Then he would have to cut out the body of my spine and replace it with metal.  The surgery would require more recovery time than a simple back surgery.

The question I had: would he do it?

In the words of my favorite spinal surgeon: “Oh hell yea.”

But first, he wanted me to find out if it would respond to radiation.  He felt that a less invasive approach, if it would work as well, would be better for me.

That’s where we left that decision.

On Tuesday, I’ll meet with Dr. Ong and see what he has to say about surgery and other treatment options.  It’s the first available appointment he has before next month!  Clearly, this man should have some better insights.  I hope so.  I’m growing tired of dead ends.  It’s harder and harder to deal with them.

Gentle Flushing Sound

After the disaster that was my latest MRI, I moped a little and then sprang into action.  I contacted one of the doctors I work with at the hospital and asked him if he’d be willing to look at my scans and see if the spinal metastasis was operable.  In the mean time, I also contacted Dr. Brooks to find out what we were to do next.

The conversation I had with him was highly uncomfortable.  When he called, he sounded panicked by the text I had sent him.  Then again, I did tell him to call me ASAP.  I suppose even I would have thought something was amiss.  I asked him what our next step was now that there are mets on my spine.  The line went eerily silent before he softly asked, “What mets?”  Apparently, he had missed the line in the report about the lesion on my spine.  He told me he would call me when he was done with his current patient.

About an hour or so later, Dr. Brooks called back and said he reviewed my scan and phoned the hospital.  Apparently, the lesion on my spine showed up on December’s MRI as well, but no one had noted it in the report.  It appeared around the same size, maybe minutely larger.  Then, he apologized profusely and kept telling me how physically sick he felt having missed it.  I tried to tell him to stop apologizing and guide me through what would happen next, but he just felt so bad.  I told him he could make it better by being honest with me about what lies ahead.  Are we fighting a losing battle?  He told me that we needed a miracle and he just didn’t have one so now it was time to find a doctor that did.  He was personally going to take care of getting me an appointment with Dr. Ong at the University and get back in touch with Dr. Von Hoff.  He was going to help me to the best of his ability.

All of this leads to today: my spinal MRI.  Dr. Scully, the neurosurgeon I work with, had taken a look at my scans and told me it wasn’t a clear enough picture to decide if the tumor might be surgical.  He requested I have a lumbar MRI.  Dr. Brooks was more than happy to order it for me and I went through yet another MRI.  This one, however, was significantly different than the last few.  Normally, they lay me on the table with a pillow under my head and a wedge under my knees to support me comfortably.  They place an IV, place a strap around my chest to monitor my breathing and place a heavy plate over my chest (which I believe helps create the pictures.)  After all that, they give me ear plugs and headphones to drown out the annoying sound of the machine.  Then, I spend the next two hours trapped with just my head barely outside the tube of the the machine while they take films.

That is not how a spinal MRI works.

First, they had me lay completely flat: no support under my head or knees.  My head was placed in, what I describe as, something resembling a toilet seat: it was U-shaped and open.  I still had ear buds, but no headphones for music –Milo said the least they could do was play a flushing sound– because the crown around my head didn’t leave enough space.  There was no breathing strap or heavy metal piece for the scan, which was definitely more comfortable.  What wasn’t as comfortable, though, was the actual scan

Forgive me, I’m about to be a little crude…

I now know what it is like to be a penis!

Laying perfectly flat and still, the bed was slid into the machine so that my head and chest remained inside the tube.  Some of the scan was done and then I was pulled back out partly for a different view.  They continued to move me in and out while taking different scans.  Get the analogy now?  Exactly.

Fortunately, I was able to fall asleep and it wasn’t a problem for the scan itself.  It also made the nearly ninety minute scan seem much shorter and tolerable.  When I wasn’t sleeping, I was turning the sounds of the machine, which are obnoxiously loud, into words or songs.  Sometimes it had a really great techno beat and other times it was mocking me.  At one point, I truly believe it sounded as if were laughing at me.  That wasn’t nearly as pleasurable, not was the heat the magnet created against my arms.

After the first set of pictures, the tech pulled the bed back out and injected the die with a needle instead of starting an IV.  He finished the scan and we were on our merry way.  The tech also gave me a CD of all my past scans and the images from this most recent one.  At least when I go see Dr. Ong I will be prepared.

Monkeys

I have to start this story by explaining that I collect stuffed monkeys.  I have about thirty of them so far, from little key ring sized creatures to giant three-foot-tall ones.  This doesn’t include my most prized monkey: my husband.  I started calling Milo my monkey when we were dating.  He would give me a series of quick nibble-like kisses and then make the sound of a monkey.  The nickname stuck and thus the birth of my monkey menagerie.

One monkey stood out among the bad news from this week.  He is on the smaller side of stuffed animals, maybe a foot long but really thin.  He’s mostly brown, except for the white of his face.  Like all the other stuffed monkeys I own, he’s smiling.  They all smile, which isn’t always comforting when you are crying your eyes out among their sea of happy faces.  This particular monkey, though, I gravitated towards today.  We had purchased him at Commenci, where I found all the cute head gear.  When I got home, I scribbled the name Chemo on his tag.  He was the one that would represent the battle of my life that I would win.  He’d represent that which would save me.

Today, he made me feel such a loss.  I sat and stared at him for a few moments and my heart ached. I could see a scene in my head as clear as if it were happening in front of me.  A scene I wanted so badly my body ached for it.

There was a little boy standing beside his bed.  Soft brown hair draped over his forehead and light blue eyes peeked from beneath.  When he smiled, he looked just like Milo, right down to the sweet little dimples and crinkles along his eyes.  A young version of my husband with a sweet, melodious voice that just sung softly to my heart.

Chemo sat on the side of it, his little brown legs dangling over the edge while the boy held his little paws.  At first, he babbled a little to the monkey, speaking so quickly as if the two had their own language.  He paused suddenly and then climbed onto the bed beside the monkey.

“Let me tell you a story about my Mommy, Chemo, and why you are my best friend.  Mommy was very sick before I was born.  So sick, they though she was going to go to heaven.  But she didn’t and then she had me!  You saved my Mommy’s life, Chemo, and that’s why we are best friends.  You kept Mommy from going to heaven.”

His name is Elliot Jonathan.  Milo’s uncle died a few years ago from a massive stroke.  At the end, he couldn’t remember Milo’s name and called him Eli.  I like the name, especially as short for Elliot.  When we decided to have children, we knew our first son would be named Elliot, Eli for short.  Jonathan, however, is special to me.  A good friend, no a great friend, of mine from high school passed away.  He was only twenty-nine.  When I left New York and moved to Arizona, Jonathan was the one friend that made sure we never lost touch.  He remembered every holiday, every birthday and attended every big event.  He literally spent a week here for my college graduation.  Jon, as we called him, was an amazing man and he never asked anything in return.  His death hit me surprisingly hard.  We were close, but I never realized how big a hole would be left in my life without him.  Elliot Jonathan was meant to be born to honor these two wonderful men.

I feel like I am watching that dream slip away.  My baby boy, the one I wanted so badly, feels so close and yet so far.  I want that little boy; I just don’t feel like I am going to get that opportunity any more.  It’s breaking my heart.  What of all the plans we hoped and dreamed for?

Milo keeps hoping and I appreciate that he does.  I’m digging deep for hope, but it is incredibly difficult.  I’m losing my optimism, which was so fleeting before this.  When it all began, I had all the hope in the world.  Three months of treatment sounded like nothing.  But three became six with no end in sight.  Not-so-great news like cancer became cancer that was taking over my body despite our best efforts.  Each little win was overshadowed by a great loss.  I’m so tired of losing.

But I want that little boy playing with the monkey.  I’ll do anything for that.

This is NOT How You Deliver news

Dear Oncologists,

For the record, your patients understand that there is a certain amount of bad news during cancer treatments.  Calling them with false hope of good numbers while concealing the truth of the results is just a really shoddy thing to do.  It’s like…well telling a cancer patient things are shrinking when they aren’t.  I know, crappy example, but right now I’m frustrating with your inability to communicate with the people you care for.  It’s utter nonsense to build false hope in those that are suffering.  What is wrong with you that you can’t face the facts that sometimes you lose?  Why can’t you discuss the bad with us without building up the utter nonsense you like to call stable?

Kindly pull your craniums from your rectums and treat patients with respect.  It is not respectful to tell us things are getting better while hiding the fact that they truly aren’t.  It is not respectful to instill false hope in people who are pleading with you for the truth.  We demand honesty and respect.  You promised to do no harm; breaking our hearts is more harmful than lying to inspire us to push on through the fear and pain.  It is wrong to give us a false sense of security.  We will no longer tolerate it.

Sincerely,

A Really PO’d Cancer Patient

***

Today, Dr. Brooks was out of town.  I almost wish they’d just stop letting me come to chemo when he isn’t there.  Or better yet, let’s skip the stupid appointment part, dump in the chemicals and let me go home.  I’ll talk to the doctor or no one else from now on.  Linda, as always, continues to be useless.  She can never answer my questions.  I can’t imagine I’m out thinking a woman who has trained in this field so either I scare her with my questions or she’s literally not permitted to answer them, which makes her useless.

She did, however, have the ability to pull up my MRI and CT results from Tuesday.  I, of course, wanted to see the numbers that were “minimally better” than the last scan.  I’d put all my eggs in that basket before; I wanted details.  Why?  WHY must I want details??

The CT scan showed that the mets in my lugs are larger.  Not grossly so, but larger all the same.  The first was 8x11mm and is now 11x13mm.  The second was 11x14mm and is now 16x17mm.  There are some smaller nodes throughout the chest and some in the fat around my diaphragm –awesome, even my fat has cancer!– but the rest of the test was about the same as last time.  The grown in the tumors, however, would explain my cough, chest pressure and pain.  I thought it was too good to be true that things were getting better, even if better was just stable.

The biggest blow, however, came on the MRI findings.  The numbers are slightly better, a few tenths of a centimeters change in the tumors.  That was the glimmer of hope in an endless sky of darkness.  The MRI picked up on “two T2 hyperintense, T1 hypointense enhancing lesions within the L3 vertebral body, compatible with metastatic disease.”  For those that don’t speak medical crap, that means they have found cancer moving into the bones of my spine.  This is not good news.  This is ten car pile-up type news!  Cancer in the bones is seriously impossible to fight.  Bones aren’t as vascular as other tissue so it is much harder to deliver medication there to beat the tumors.

So, what does this mean?  What do we do next?

Remember Linda?  Yea, not so helpful with those questions.  I asked if there was any chance the tumors in my lungs and on my spine might not be the cholangiocarcinoma, could we have a second primary tumor we are dealing with?  After all, they aren’t responding to the irinotecan despite the fact the liver tumor appears to be.  Carla had a great response to this; the liver is highly vascular so she thinks that the drugs are working better there due to access.  Lungs, to me, are pretty darn vascular too, so I’d like to think it should be working in my lungs as well.  I just wonder if maybe we should biopsy and compare what is in my chest to what was found in my liver to be sure.  Linda wasn’t sure about that.  She wasn’t sure about getting consults to surgeons or finding doctors worth giving me a fighting chance.

I’ve spent the last few hours crying.  I feel like we’re moving further away from where we were seven months ago when this all began.  It’s hard to keep being hopeful when my results get worse and worse each time.  Maybe I just need to stop letting them do scans so this all comes as a huge surprise when I stop breathing or something…

Milo is being his awesome self.  He told me he will love me if I end up in a wheelchair because the tumor crushes my spine.  He’ll even lift me on the potty.  Because that right there, ladies and gents, is true love.  I just…I wish he would just turn and leave.  I don’t want him to remember me as the woman he had to take care of in the end.  I want him to remember the fun we had.  I know this all is morbid and a little melodramatic, but when the news just gets worse each time, I find it hard to think that things will suddenly improve and we’ll have our lives back the way we planned.  Milo deserves better, we both do.  I’m just not sure how to get there anymore.