SMH

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Dave’s schedule for today – 

7AM Labs

9AM Nurse visit

10AM Infusion

The schedule allows two hours between having blood drawn and the doctor/nurse visit so that by your appointment time all the information they need is at their fingertips.  Similarly time is allowed between labs and infusion so that the chemo drugs can be made.  This process is supposed to take 1 1/2 hours.  

We were up way before dawn’s early light in order to make the 7AM lab time.  After labs were drawn, we went to the little cafe to get coffee and something to eat.  Because the research nurse is ALWAYS behind schedule, Dave gave her a call to let her know where we were sitting and that his labs were done.  She called back and said she would be over right around 9.  At 9:30 she finally appeared to say that she was going to put her coat away and “get settled” and then she would be out to see us.  

At 10:15 or so, Dave ended up laying down on the bench and falling asleep while we waited.  He was exhausted from being up so early, not sleeping well last night and from the residual effects of last week’s treatment.  I drank my coffee and just kind of zoned out.  A loud voice brought me out of my stupor.  A woman’s voice was enthusiastically greeting someone.  She was telling the other person how beautiful she looked.  I didn’t think too much of it.  A few moments later, I happened to look up to see the young “beautiful” woman opening her wallet and handing money to her complimenter.  I still wasn’t thinking anything was amiss until the woman pocketed the money and told her she “appreciated her giving what she could.  God bless you.”  Panhandling in the lobby of the Kimmel Cancer Center.  The young woman looked a little stunned as she got on the elevator, and the other woman checked in at the outpatient center.  I am still questioning whether I saw what I think I saw.

As time continued to tick away, I sat and watched my husband sleep, I began to get annoyed.  Annoyance turned to frustration which eventually morphed into anger.  It was now almost 11AM.  How long does it take to hang up your coat?  The waiting room was at capacity.   Hopkins has been described as  “the ivory tower”, “the gold standard of medicine”, “cutting edge”.  How can such a prestigious institution accept ridiculously long wait times as common practice?  I had enough and went to the patient coordinator and told her I wanted the nurse paged because we had been waiting an hour and a half for her to hang up her coat and that our appointment was now two hours late.  Within minutes, Ellen was standing in front of us.  She sent us up to infusion and said she would consult with us there.  Part of me thinks that if i hadn’t spoken up, we would have been there for hours more.  After all, it has happened before.  

Once up in the infusion suite, things went very efficiently and smoothly.  Dave was taken back right away and hooked up to the IV.  Ellen eventually made her way up and shared Dave’s lab results.  (Much better numbers than this time Cycle 1.  The only exception being his red blood count which is at its lowest point to date.)  So all’s well that ends well.  I had calmed down by the time Ellen joined us, but I was very tempted to ask her “If Dave was your son/brother/father/spouse, would you think that the attention he got today was acceptable?”  I have a hard time believing that she could say yes.

xoxo,

Robyn

Laugh Lines?

Aside

Before the State of the Union, one of the local news programs showed a montage of photos illustrating how much Obama has aged during his presidency.  My reaction was “yep, that job would do it to you” and “he still looks good”.  It got me thinking about aging ,and I quietly congratulated myself for holding up reasonably well during the last few years.

Then yesterday I noticed this in the rearview mirror.

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Are you seeing those cavernous crevices in my forehead?!  And around the eyes.  And….

Definitely caused by doing this.

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I make this face when I am thinking hard or when I am confused or concerned about something.  In other words, I make this face A LOT.  Sam is coming off of a pretty rough string of stressful events.  A few of them I mentioned previously.  Her week was capped off when someone hit her parked car and then drove off.  Luckily some students witnessed the accident and called campus police who handled things beautifully – from guiding Sam through the accident report to locating the other car and its owner.  As Sam has been dealing with things, I have been doing my parenting from afar.  Making her laugh when she is feeling down.  Boosting her up when she is feeling stressed.  Giving her the tools she needs to deal with the insurance company and collision shop.  And being the person she gets frustrated with because the situation is so exasperating.  Wrinkle, wrinkle, wrinkle, crease, crease, crease.

Tomorrow Dave heads back up to Hopkins for his next infusion of Irinotecan.  He did really well this week overall with fatigue and some nausea being his biggest obstacles.  He was even able to go into work a few days and catch up a bit which I know he was very happy about.  If history repeats, the next two weeks are likely to be more challenging with lots of resting and staying home.

In the meantime, I am off to look for some sort of anti aging serum.  Or maybe a headband.  A tight one.

xoxo,

Robyn