After my sister Deana, who has multiple myeloma, struggled with an infection for much of June, we are all grateful that July was a much quieter month.

I should say that Deana felt my coverage of her cold and emergency room visit in last month’s column ^[1] was an overly dramatic retelling.  I stand by my version of events, even if I wasn’t in Pittsburgh with Deana to witness all of it firsthand.  Perception is reality, and I perceived it as a bad situation.

On Saturday, July 14, Deana and her nine-year old daughter, Clare, met me in Washington, D.C., where I was attending a conference.  After settling in, we had dinner and then enjoyed a massive fireworks display over the Potomac River.  It was a fun beginning to Camp Aunt Debbie Version 2012.

Despite the long drive to D.C., Deana looked terrific.  I had promised that I would give her plenty of time to rest and relax, but that was a promise that was hard to keep.  With so much to see and do, our days and nights were full, and we generally fell into bed exhausted.  We had a grand time for ourselves.

We hit one bump in the road, one likely familiar to many fellow multiple myeloma travelers – challenges with Revlimid ^[2] (lenalidomide) prescriptions.  After 14 months of Deana being on this drug, it is beyond my com­pre­hension how there can remain constant issues with getting this drug delivered on time.

Deana’s Revlimid was to be delivered to her house before she left Saturday morning.  Alas, she was ready to leave, and there was no Revlimid.  A call to the mail-order pharmacy yielded conversations frighteningly similar to many she’s had.  They aren’t sure what happened; they know what happened; they aren’t sure where the medicine is; they didn’t have needed test results… I would venture to say Deana has heard it all.  This system is rife with inefficiencies.  How incredibly frustrating for someone who is battling cancer to have to deal with such unneeded stress, time and time again.

Deana left Pittsburgh without the Revlimid, deciding to bring some she had in her supply from many months ago.  Although the pills weren’t the proper dosage, her plan was to take them and get as close as she could to the appropriate number of milligrams while she waited for the situation to sort itself out.

On Monday morning, Deana contacted the pharmacy yet again.  After more than an hour on the phone, she arranged for the medicine to be delivered to our hotel on Tuesday.  Another hour of her life needlessly lost.

Thankfully, the representative she spoke to offered to call her when delivery had been confirmed.  On Tuesday at lunchtime, Deana called me to let me know she had received word that her Revlimid was on the premises.  Since Deana was away from the hotel, visiting with our cousin and her children in the Virginia suburbs, I decided it was imperative that I break away from my meeting to ensure that the package had indeed arrived.

To add to the humor of the situation (if one could call it humorous), when I finally learned that the package was at the business center and not the front desk, there was another round of chaos in trying to locate the box.

The first person I spoke to had a vague recollection of seeing it, but she was fairly certain it was refused because the name didn’t match the name of any registered guest.  She asked for assistance from two colleagues, who disappeared for at least five minutes, maybe even ten.  They emerged from the back room looking forlorn – they couldn’t find it.

So, I became politely insistent that they allow me to visit the back room to see if I could locate it.  Surprise, surprise, I had it in my hands in less than 30 seconds.  I was glad I had taken care of this, because Deana didn’t need this hassle on top of everything else.

This incident has reminded me that my work is not done.  In addition to my continued advocacy work with regard to multiple myeloma research, it is clear that I need to spend some time on patient advocacy, looking for ways to make these processes more customer service-oriented.  Fortunately, customer service was a key area of research during my master’s studies.

Now, I just need to find the time… There is so much to do in this epic battle against multiple myeloma.  As always, I thank you for serving as fellow warriors.

Oh, and on another note, if you find yourself in D.C., Deana, Clare, and I highly recommend the Cupcake Crawl – it is a sweet and decadent afternoon.