Thursday, June 25, 2015

Gnarled, Cranky Cancer Veteran

This is what I am becoming.  But in a good way.  One thing I can no longer summon patience for is an unprepared doctor.  Fortunately for me I understand medical terminology and am assertive enough to push for answers to information that does not sound right to me.  And fortunately for me my regular crew is pretty awesome.

Day 8 of 10 radiations is done.  It has not been bad.  Friends and family have taken turns driving/babysitting me on the daily trips (two hours each way) to Portland.  I know that sounds crazy, but I really did not want to stay in P-town for two weeks.  First of all, there is a heat wave – low 100s in the city and high 70s – low 80s out here.  I am definitely more the out here type.  Second of all, the appointments take literally five minutes from start to finish.  So, if Laura and Jon live in Portland – even in the free housing we were so graciously offered – what do Laura and Jon do for the other waking hours outside of that five minutes?  Why, spend money of course, and not see our kids and our doggies, and be HOT, too HOT.  The rotating driver scenario has been great, even fun aside from the five minutes of whole brain radiation.  My girlfriends really, really rule. I have spent some pretty good quality time with close friends, Jon, and tomorrow with Ani.  I sense a Burgerville seasonal berry shake in the works.

Thursday is “doctor day” at the two radiation centers I have gone to – more baby-fying, infantilizing terminology if you ask me.  My doctor is gone this week so another doctor saw me.  I like my guy.  He is smart, confident, and is whom my excellent oncologist sent me to.  We talked last week about next plans and all the detritus to come so I wouldn’t be left hanging with him not there.  So.  The other rads onc came into the room.  I had one question and only one, concerning a drug side effect – nausea.  As is the case these days, doctors, nurses, medical assistants, and receptionists spend a lot of human interaction time looking stuff up on the computer and charting as they go.  I get it.  It is the way it is. 

This doctor proceeds to tell me that my nausea could easily be caused by the metastases in my liver. 
Me:  Dr. Raish did not mention any metastases in my liver.  (Me, feeling like no way did Dr. Raish sugar coat my shit for me. And if he did – betrayer!)
Her: It says here in your May scan report that there are multiple hepatic lesions, suspicious for metastases.
Me:  Could I see that? I have not asked for a copy of that report yet. (Cue – stand up and read the screen over her shoulder.)
Me:  Um.  The date of this scan is May of 2014.
Her: Yes, nausea can be caused by metastases in the liver. 
Me, in a thought balloon: WHAT THE FUCKING FUCK?  Did you not just hear me?  You are reading the report from my diagnosis of recurrence a fucking year ago!  My records should certainly reflect that I have been NED, at least from the fucking neck down, since last October.  FUCK! 
Me:  My understanding is that I do not have radiologic evidence of liver mets at this time.
Me, in a thought balloon: Jon, let’s get the fucking fuck out of here.
Her: So you will probably lose your hair very soon.  Have you noticed hair on your pillow?
Me: No. And I have gone bald two other times from cancer treatment so this is not an issue I really need to discuss.
Her: Do you have any other questions for me today?
Me: No.  We’ll just get on the road and head home.
Me, in my precious thought balloon: Like I said, let’s get the fucking fuck out of here.

The End.

This is me, the gnarled cancer veteran.  A couple of years ago I would have burst into tears and believed her.  And stressing out the nice, nice husband, that is pretty unforgiveable.

You guys make good money.  The least you can do is prepare to see the patient.

There, I feel better now. 

Monday, June 15, 2015

I am not a hypochondriac.

We have a pretty appropriate saying in my online support group and that is Fuckity Fuck Fuck Fuck.  From the neck down I remain with no radiologic evidence of disease.  From the neck up, another story.  After feeling a little funny doing flip turns and a tiny bit funny sometimes when I turn my head, I asked for a brain mri.  Now, in another life these feelings would have made me think I was too hungry, or a little dehydrated.  In my current life I thought brain metastases.  I always think I need a t-shirt that says "I am not a hypochondriac."  If you have metastatic breast cancer whatever you think might be happening is not the imaginings of a neurotic, overactive mind.  

Turns out I have lots of little brain tumors.  Yup, I'm not a hypochondriac.  They are too poorly differentiated to be able to have targeted radiosurgery (gamma knife) done.  Today I will have the first of ten sessions of whole brain radiation (wbr).  After that I will discontinue my beloved Perjeta and Herceptin for drugs that cross the blood brain barrier - these are Xeloda (an oral chemo) and 
Tykerb (an anti-HER2 agent whose molecules are small enough to cross the bbb).  I was also put on an aromitase inhibitor to address the hormone positive status of my current cancer, and I will take an anti-Alzheimer drug (off label use) per recent excellent data that shows it mitigates the cognitive effects of wbr.  For more of the technical crap see Jon's blog  

It was a good year of feeling mostly very healthy with few side effects.  Those days are done.  Up side - I quit my little part time job which frankly, I didn't enjoy much at all.  Shit's getting real as they say.  The radiation should buy me time but rather than thinking in terms of say five or even ten years, I think in terms of one or two.  It's possible I'll have more and possible I'll have less.  We never know what new treatments are coming downt the pike that could help me.  There is at least one trial that really interests me but at this point it is only in phase 1b.  

Anyway, my strategy is to do lots of yoga, lie around with my family and my dogs, buy some easier crossword books in anticipation of getting even dumber than all the chemo made me.  Bucket lists are wierd.  I wanted to go to Paris but really the thought of it is exhausting.  The things that make me happiest are hanging around with my kids and husband and friends, doing yoga, walking the dogs.  Even at my chemo lows I was and will be really content texting back and forth with my daughter when she goes back to school.  She is hilarious.  We have a planned trip to Belize over Christmas.  That will be a happy thing.  More of a relaxing vacation than touring the great European cities, for me.  

My friends (they are also family) rock.  For 10 trips to Portland for radiation the schedule of drivers is filling up.  Meals are coming.  My birthday was really, really wonderful, especially when I decided I did not need to flit around and be hostessy, but instead planted on the couch with whoever wanted to plant there too and talk and laugh.  

So the update is, things are a big giant shit sandwich, but we are supported and loved while we hold our nose and deal with it.