Monday, November 30, 2015

Outtakes

Sunday, I asked Shelbie to take a picture of Spencer and I.  It took nearly a dozen tries to get something remotely decent.  His eyes were closed, mine were closed, someone wasn't looking.  We never did end up with a picture that I was happy about or that I could successfully layer on the anti aging filters, make the lighting more agreeable, whiten my teeth; you know, make the picture look just a little more than perfect.

So, we end up with goofy smiles, harsh lighting, just an all round silly picture.

An outtake.  A do over...Try again.

Today has been one of those outtakes.  A collection of things I wish we could just do over.  Scrap the day and try again.

Today, Spencer drove nearly all the way back from Utah after just driving back there yesterday, so he could attend an appointment with our new Hematologist. He would have just spent the night but he had a job interview in Salt Lake this morning and this doctor appointment in Pocatello this afternoon.

I have invested my heart and soul into this new doctor.  I am so desperate for help.  My hopes were high.  By all accounts of our experience before meeting the doctor, it held a lot of promise.  The nurses were stellar and personable.  They were efficient and friendly and interested in Spencer.   The hospital was new, the clinic clean and peaceful.

The doctor came in and right away, I knew we were in trouble.  After doing this for 23 years, I have a feel for doctors.  He came in the room, no introductions and didn't even ask who we were.  He had obviously done his DC homework because he started right in with facts and cancer figures, telomere length studies and most of the other important details.  He kept rambling on and only after 10 minutes, asked why were there.  Not once in the 75 minute meeting did he refer to Spencer as anything but 'the boy'.  He spoke in third person like we were discussing a dog that wasn't in the room.

At some point, I probably checked out.  He kept asking the same question a dozen different ways and who knows what I was saying but communication wasn't happening.  Finally, Shelbie just put her hand up and said something...I don't even know what she said.  I was already frustrated, beaten down and bewildered.  I felt stupid, unprepared and like I had no clue what was happening to my kids.

Doctors always seem to come into these new appointments with and extra amount of intellectual confidence, intimidation and inflated egos.  They always seem to have a point to prove like they are God or something.  He was definitely smart but what is the point to that if they can't communicate or listen?  About halfway through, they realize that they have no idea what they are talking about, that they are dealing with an overwhelming situation and then we are just left with an ego and any kind of blame they can put on me to make them look better.

That's exactly what happened as the dreadful appointment went on. I can tell I'm wearing down because I could seriously picture myself storming out there in the biggest hissy fit known to mankind with guns blazing...(figuratively speaking of course)  Instead, I just sat there trying to keep myself from having a stroke and an out of body experience.

He said, "How am I suppose to take care of these kids when there are no standards of care?  If they had a risk of breast cancer, the cancer association has clearly outlined what the screening consists of and what you do when a person gets breast cancer.  With this there are no standards.  It's all hypothetical.  Some doctor or two call themselves experts in DC and they call the shots.  It's really hard to do my job under those circumstances."

What do you say to that?  Really.  Welcome to my world of orphan disease.  It's kind of hard to do my job too when doctors only want the easy cases.  The cases where there are a million or more studies and they don't have to research or look any farther than Web MD to know how to care for their patients.  We have no standards either.  It's a mess.  We constantly live in a mess.

We finally left without any answers.  The fact that Spencer is STILL sick and just finished another two weeks of antibiotics was not an important fact to him.  Toxic neutrophils were not important to him or the monocytosis or the abnormal lymphocytes.  The boy has not one normal blood cell to which he agreed and also acknowledged that the fact Spencer has never had a fever through all this is proof that his white cells are shot!  Not doing anything.

I got an earful from Shelbie and Spencer when we got to the car.  They were frustrated but not in an angry way...worse...sarcasm and humor which almost always hurts more than anger.  Spencer said, "I have an idea if anyone cares to hear what the boy thinks...let's just get a head start on Hospice so that they can at least keep me comfortable."

Shelbie actually was pretty upset.  It's just so sad that these kids really feel like they are dying and no one can give them one bit of hope that they are going to be okay.   The truth is, I don't think we will ever need a hematologist.  Even if we are faced with Myelodysplasia, leukemia or aplastic anemia my kids are no longer eligible for a bone marrow transplant.  They don't have good enough heart or lung function to allow them to survive the chemotherapy regimens needed prior to transplant.  So, maybe we are just wasting time and resources.

One thing they both verbalized was that they tell doctors over and over about a symptom they are having and the doctor says things like, "Well, you look good enough."  or "The CBC is fine."  They completely discount what they are feeling and gloss over it.

It was a rough day.  We need a do over.   I'm just not sure what the do over would consist of.  I have a kid still sick with Salmonella, a kid with lesions of some sort all over the front of her brain and a kid barely hanging in there.

All the way home from Pocatello, I was thinking about something our surgeon friend told me when he and his wife came up to the hospital earlier this month to visit Spencer.  He said, "Ya know Kath, you can run as fast as you can but at some point, this disease is going to outrun you.  Then what?  How are you going to handle that?  What is your plan?  You need to be able to let go."

Maybe it's time to stop running.  I don't know.  At some point, maybe trying to get answers does more harm than good.  Aren't we hard wired to fight? Some days, I feel like we are being held in contempt by this stupid disease.  I don't have any answers tonight.  I feel completely let down.  Everyone seems to move on from our problems so easily and quickly but we haven't moved on.  We stay stuck and I just don't know how to get unstuck tonight.
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