ONE MORE METASTATIC PATIENT: MY MOM

I'm staring at the screen not quite sure what to say, how to say it and I'm struck by what is, in all honesty, a cruelly ironic twist.  Many of you already know this from twitter but some of you are not part of that fast paced, word limiting form of communication.

I'm going to start at the end.  I don't know how I was able to say this in 140 characters.  I don't know how I was able to say this using ANY characters to be quite honest.  On Friday evening, at 6:35 PM, I sent this into the twitterverse:

I was not supposed to be a #FearlessFriend to my mom. It appears she is #metastatic. After 5 yrs and 4 mos.#bcsm
— AnneMarie Ciccarella (@chemobrainfog) January 4, 2013

I had just finished talking to the doctor.  I was waiting to be taken into the recovery area to see my mom.  Throughout the course of the day, I tweeted a bit.  Mostly, it was the phone.  I have four siblings, two grown kids and a number of close family members who were expecting updates.  And then, I have my OWN friends.  Group texting was wonderful.  Until there was information that wasn't appropriate for a text message.  THAT was not something to put into a text message. THAT required phone calls.  THAT also required me to talk to my mom first.

"It's definitely cancer.  I already spoke to your mom and to Dr. S.  AND, Your Mom Knows."

I was reeling.  Reeling and waiting with no one in the room.  Making a phone call didn't even cross my mind.  My brain was disengaged.  There would be no conversation.  I couldn't speak.  I had to save my words for mom.  Thanks to all of this technology, I know I was trying to digest his words for just about twenty minutes before the nurses brought me into the recovery room.

What did I do in that twenty minutes?  I turned to twitter....  I would be heard and I would be immediately supported.  And I was.  Before I back this story up......to everyone who has sent me replies, I am grateful beyond words and I am sorry if I did not have the chance to respond to you individually.  I read every one of them.  You held me up when I knew I had no choice but to follow the advice of Churchill.  If you are going through hell, Keep Going.  I had to keep going.  You helped me to keep going.... whether you typed a reply or sent thoughts my way because you saw the tweet, the support I felt was instantaneous and palpable.  I will never forget that kindness.  EVER.

While I hope my mom chooses to pass on this particular blog post, I know it's unlikely.  When I walked into the recovery room, I told her she couldn't do anything the easy way.  Much had happened and it happened quickly.  She said something about "blog material" and your tweet friends.... I laughed and told her "My tweet friends already know what's going on, they got your back."

For mom's benefit: thoughts, prayers and hugs were coming to you from all over the the US and Canada... and from several countries in Europe and from Australia and from South Africa.  The whole damn world is holding you close.  Know that.  And know that I sent a text containing ONE word to Lori.  One Word. I sent that text just as I got to your side in the recovery room.  The text was sent at 6:54.  The phone rang instantly.  "What can I do?"  She had been hand wringing with me for weeks and she told the whole blog world.  She is my Fearless Friend.

Back to last Thursday/Friday.....I posted a copy of my letter asking NBCC to be more specific in the way they address metastatic disease which now has a bit of an eerie feeling.  I wrote respectfully.  Lori's letter was far more descriptive and she did not mince words.  I had no right to use a sharp tongue.  My words, respectful, but definitely eerie, especially the part about understanding and preventing metastasis...... I expressed that it would be helpful to me, presently NED but with the full understanding I could present with a distant recurrence tomorrow.

One day after that posted, my mother went from NED to metastatic.  Maybe I should stop writing?  Stop bitching?  No... maybe I need to be MORE vocal.  This is the kind of "in your face" happenstance that can not be ignored.  This is the stuff that pushes you back and forces you to take notice.  OK... You have my full attention.  As IF.......

Mom and I traveled as a duo on Friday because it was a simple procedure.  A needle biopsy of her bone which we already knew was going to be a challenge because of the location of the area that would have to be biopsied.  I didn't plan for complications.  I didn't plan for anything other than traffic patterns.  Her appointment was at 12:45.  If she was done quickly we would be on the road ahead of rush hour traffic.  If she wasn't, we would be dining somewhere on the Upper East Side.  No shortage of wonderful restaurants.  That was the extent of my contingency plan.  Clearly I would suck at being a Boy Scout with that whole Be Prepared gig.  Except I wouldn't know that until much later.

Sloan Kettering is one of the finest facilities in the world.  Even though we had to wait, which I fully expected with a 12:45 appointment, the waiting isn't unpleasant.  At 2PM, we were brought into the waiting/recovery room.  I was already familiar with the entire process.  My sister's biopsy was on December 26th.  Same area.  VASTLY different from 2006 and 2007 when I was in the midst of my own treatment.

At about 3PM, they wheeled her into the operating room.  There is a picture on my phone which I won't post but I did send to my siblings.  My mom is pretty funny when she's high and she was soaring from the xanax the doctor instructed her to take.  She was joking around with the "party hat" ... tilted it like a French beret.  That was pretty much the last time anything was funny.  And that became the line in the sand.

Although we both expected to hear bad news, and neither of us was saying it to the other, we hadn't yet heard bad news so everything was still a big joke.  I suppose it was about an hour before the nurse approached me to tell me the biopsy was done.  Within moments the recovery room called to tell me they would be bringing me to see her in about half an hour. That was 4:30.  Two things come to mind. I do NOT LIKE the being on the other side of the door.  I would much prefer being the one in the gown.  Technically, that's the same thing, isn't it.... Bottom line, waiting sucks and I apologize for the seven or eight times I was gowned up while others were waiting.  Thank you all.  The shoe was on the other foot and I don't like it.  I suspect it's all about the drugs.

I notified the masses that the procedure was complete and I would be seeing her soon.  The nurse approached me again and I'm thinking he is going to bring me into recovery.  Instead, he begins speaking.  Lung. Puncture. Operating Room. Prepping Her. Overnight. Wah Wah Wah...... Not only do I suck at Boy Scout, I wasn't being a very attentive listener.  I was stunned.  I didn't prepare for THIS.  I was yelping restaurants since my contingency plan was all about traffic.  Think. Do.SOMETHING.  Right.  Text my siblings.  That didn't really go over too well.  Phone starts buzzing all over the place.

Then a doctor came to explain everything to me.  The needle nicked the lung, the lung deflated and they had to insert a chest tube.  This all sounded pretty ominous.  Freaking out?  An understatement but I was in emergency mode and I AM good in a crisis even if I suck at preparing ahead.  I was calm and clear as I listened to him explain as much as he could.  I remember asking if they were able to complete the biopsy before this "episode."  He was unsure because he wasn't in the room for the biopsy.

From 5PM until 6:30, I was walking around in circles.  I think I spoke to a few people but I can't be sure.  Mostly, I think I was moving from one seating area to another.  I may have been checking emails or attempting to write or more likely, I was googling "chest tube" "collapsed lung" "lung puncture"  ...  I honestly do not remember.  I remember the nurse coming over to tell me he was leaving and someone else would be at the desk.  I remember him saying that the radiologist who did the biopsy would be out to speak to me.  I remember the kindness.  Genuine kindness and concern.  You can't fake that stuff. You either got it.  Or not.  And you don't get a job at Sloan Kettering if you are looking for a job.  It's a vocation, a calling. I kid you not.  It never ceases to amaze me.  These people bring their A game every day.  Every person.  Every day.

At 6:30, the surgeon rounded the corner into the waiting area.  We were seated beside each other on a sofa.  He explained how and why my mom's lung was punctured.  "Those first cells were very suspicious and I had to get a sample from a little further in.... I knew I was going to nick the lung.... but I knew Dr. S needed a good sample.  He can't treat it if....."  And I began finishing his sentences.  I understand, I recall saying.  Estrogen receptors, HER neu over expression and suddenly we are doing doctor speak.  Together.  And then, I stopped.

"Wait.  You are SURE this is cancer?"

And that's why I suck at contingency plans.  I wasn't expecting to get any sort of biopsy results.  I was still thinking about restaurants.  And then, I wasn't.  I still had to face my mom.  I still had to get in the car and drive home.

She is confident in the oncologist and so am I.  "It's treatable. With a pill."  It's a small spot on a rib.  There is nothing anywhere else. Not even a speck of anything.  The PET scan didn't light up anywhere else.  "You aren't going anywhere for a long, long time."

For now, we wait for the pathology report so treatment plans can be determined.

Five years and four months OR twenty five years if it's from the first primary, my mom has a distant recurrence.  She was an early stage cancer.  She was past five years.  She is metastatic.  She is in that IV League with so many of you.  I can't wrap my brain around this. AT ALL.

I remember everyone yapping about the 47% nonsense.  I'm sorry for those who took that quite seriously, but THAT was nonsense.  THIS isn't.  So let's talk about the 30%.  I call a new campaign.  I'll design the T-shirts:

I am the 30%

I wasn't supposed to be a #Fearless Friend for my mom.  I was just supposed to be her daughter.

If you think I was LOUD before, Just Wait.  This Stops Now.  Mets were already a highly personal matter in my advocacy.  I can assure you, it just amp'd up quite a bit.  I will not have my mom treated as an inconvenience.  I will not have her ignored.  I'm way past #Fearless.  I'm damn ANGRY.

Honestly, there is a little piece of my brain that wants to believe the pathologist is going to say, "Guess what, it's NOTHING," except too many doctors said too many things.  Technically, there is no pathology.  Maybe it's all a big mistake. Anything is possible, right?  Technically, we are still waiting for the results of the biopsy.  Yep.  That's my story for now.

Mom... I love you.... I got this.  YOU got this.  We ALL got this.