Home Sweet Hospital

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Sitting in a hospital for about five hours every day for 14 days, I developed a new perspective on this whole journey.  In just two short months, my life changed drastically.  I was diagnosed in early March and by mid-April, I had done my research and made my decision to be in the Protégé Encore study in Seattle.  I started to make arrangements for the move from life in the Tex-Mex Southwest to life in the Pacific Northwest.  Posting pictures on Craigslist to rent my apartment was one step; donating extra belongings to the thrift store was another; writing a letter of resignation was yet another; and the list went on.  I consider myself to be an organized person and I think I did a pretty good job of ordering my steps in a natural progression for me to get to Seattle in one piece.  That small part of the journey felt like my universe.  I printed off the directions and set out for 2,500 miles of driving with a trusted friend.  All I knew about my approaching timeline was that once I got to the Emerald City, I would have one day of down time and then the following 14 would be spent in a hospital.

I have officially arrived in Seattle.

I was so honed in on the “getting here” part that I had given little thought to what I would do once I got here.  I lamented the fact that I would be restricted to hospital stays, when there were so many places I wanted to see and errands I needed to run.  During one of my last days in Austin, I started making a list of the usual things:  changing my driver’s license and registration, applying to jobs, finding a climbing gym, etc.  To me, these tasks generated visions of mobility, independence and the ability to make my own schedule, when all I could picture were IV poles, needles, and hospital beds; the definition of immobility.

I underestimated my time at the hospital, though, as it turned out to be an absolute gift.  After the first couple of days, I started to feel right at home.  The nurses were nicer than I had expected, funnier than I had expected, and even more respectful than I had expected.  They felt like an extension of my family and they seemed to be my own welcome committee.  I was finally able to meet face to face with the doctor running the study as well as the study coordinator; people I had previously only talked with by phone.  I felt like I settled comfortably into my little “job” of being in a clinical trial and it proved to be an excellent transition into my new life in Seattle.  While the time of the visit changed, my routine usually went in an order similar to this:

–Arrive at the University of Washington’s Clinical Research Center.

–Take off my shoes and kick back in the reclining hospital bed.

–Start my computer.

–Talk with the nurses about the day’s procedure, any concerns I had, any discomfort or change of appearance in the IV port, as well as any developments in my social life.

–Flush the IV port with saline and start a saline IV by hooking the screw-on nozzle to the IV line.

–Draw blood for “safety labs” that will be used to confirm my overall health before proceeding with that day’s infusion.

Chillin out max and relaxin all cool... in my hospital bed.

(–I hang out for two hours on my computer.)

–The infusion drug arrives from the pharmacy and the doctor arrives to review my safety labs.

–The nurses switch the IV lines and start the infusion.

(–I am still hanging out on my computer.)

–The IV pole machine beeps to signal the empty bag and the nurse switches me back to a saline drip.

–I hang out for another hour while they monitor my overall health and take my vitals every 15 minutes.

–They disconnect my arm from the IV line, wrap my IV port with a bandage, load me down with supplies, and then I pack up my things and I’m on my way.

All in a day’s work.

I followed the plan and everything went according to how it had been described to me, but I started to realize that the 14 days would end and I would soon be living on my own in Seattle.  Just living in Seattle; no hospital appointments to attend, no clothes to donate, no research to do, and certainly no resignation letters to write.  Now, I just have life to do.  I look back to the preliminary list and decide on my priority:  Seattle, show me your climbing gyms.

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lissie

i’m a little late in finding this but it’s still nice to read about what’s been/was going on.
i still have your mag and mail that will be getting your way soon with a nice catch-up letter!
 

Shari
Shari

Thanks for posting this blog,  my 14 year old son was just diagnosed and we are considering the encore study. Did you have a PICC line or just a small catheter? Hope you are doing well, I will see if I can find more of your blogs.
 

Aunt Karen
Aunt Karen

Think back to the living you had to do when you got out of college or when you moved to Texas. The move part really starts when you finish the 14 days. Keep that journal open and when the ideas come to you, write them down. Don’t edit. Think through where you want to be 5 years from now. That’s the path to take. For you, the sky’s the limit!  Love your blog!

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