Curiosity as a Healing Therapy

Tuesday - July 10, 2012

Where would I be without my voracious (sometimes distracting and time-wasting) appetite for information?  This drive has fueled my education and entertainment since elementary school.  I tend to go on interest jags -  immersing myself completely in a subject, running details to ground, exploring topic threads until I reach an insurmountable dead end, amassing supporting research materials, and reviewing and absorbing until I have a comfort level with and strong baseline knowledge of a topic.  In a fundamental sense, I'm just curious.  Major subjects of relentless pursuit have been Tudor England (probably my first wormhole in early elementary school), the underground railroad, Edith Piaf, the Donner Party (thanks to Kim!), the 1949 Chinese Revolution, Shackleton and polar exploration, learning-through-play, the autism spectrum, and learning centers (the happy focus of the last few years).

Now, I seem to be moving towards a cancer-focused wormhole.  As I have mentioned previously, I am fascinated by the discovery of chemotherapy drugs and the development of treatment protocols.  This week's hospital stay has expanded my sphere of curiosity to include sepsis, those darling oh-so-precious neutrophils, and the symptoms associated with deficits in hemoglobin levels, platelets, and red blood cells.  Carolyn has been complicit in running many of these subjects to ground as we fill our hours in Sentara 402 and expand our knowledge of what exactly is going on with my latest round of neutropenic fever.  Yesterday, we built off my newly organized medical paper trail (gotta love sheet protectors!) and graphed my white blood cell, hemoglobin, platelet, and red blood cell results.  Layering in the timing of my Neulasta injections, platelet infusions, and chemo, we are educating ourselves about how my body is responding to both my lymphoma and the Hyper CVAD protocol.  This interest jag is informing my understanding of my treatment and hospitalizations, is keeping my mind active and engaged, and is resulting in my active participation in conversations with my medical teams (the binder clip file engendered positive response and the sheet protector binder actually raised an eyebrow and elicited an "oh my").  No passivity here.

So, what did I learn yesterday?  In conversation with my clear-communicating hospitalist, I gained an appreciation for:

• the level of my sepsis when I arrived on Saturday afternoon
• the spectrum spanning systemic inflammatory response syndrome (SIRS), sepsis, severe sepsis, septic shock, and multiple organ dysfunction syndrome (MODS)
• the plan to shift from my current IV broad-spectrum antibiotics to medications targeting the gram-negative rod bacteria infecting my blood (after they are identified, perhaps later today?)
• the need for me to be hospitalized until my blood cultures are clear for two days in a row.  I am now HOPING for a THURSDAY discharge.  Wow!

Bottom line:  I yearn for the ear infection that resulted in my last neutropenic fever.  This episode is dicier and far more complex and I am happy to be here in the hospital, under good care and with close monitoring.  My neutrophils are still basically untraceable and I am HOPING that last Monday's Neulasta injection produces results very soon.  While I have a reputation as a "strong but slow responder" to Neulasta, I am DUE for some results imminently.  Perhaps my 5:30 a.m. blood draw will show good results?

This sepsis and weak blood work might result in a postponement of next week's planned round #4 of chemo (Hyper CVAD odd cycle #2).  I have already rescheduled my follow-up head MRI and initial bone marrow transplant consultation, both of which were supposed to happen on Thursday.  Yesterday, I had Sentara FAX this week's notes and labs to my VCU oncologist and will follow up today to see if I might be good-to-go for next Tuesday's planned hospital admission.  One interesting note in going through these full records:  my temperature peaked at 102.6 (with high pulse and respiration and low oxygen rate) early Sunday morning.  Glad I slept through that milestone.

Yesterday was not fully dominated by medical data mining.  Positives abound!  Megan and I semi-skyped in the morning (she talked, I typed), Jonathan started his Orientation Leader work at Virginia Tech (yay for photos and text messages!), and Joe, Carolyn, and Daniel kept me company throughout the day and brought me some of the frozen yogurt / milkshake / ice cream product that has been a fundamental part of my diet this last week plus.  Carolyn and I indulged in some 1970s TV courtesy of Hulu and then Joe and I semi-watched the home run derby (missing Jonathan's regular presence and commentary).  And of course, I enjoyed my customary line-up of crosswords, online newspapers, and wordplay.  In a medical success story, I was successful in asking the hospitalist to discontinue my cardiac monitoring / telemetry and thus lost the wiring and transmitter that I had been toting around.


Although initially stunned and dismayed about another hospital stay, I have regained my composure and am feeling ready for however many days might be needed to get me back to a strong base of  health, ready to take on my next chemotherapy challenge.  As Jonathan would say:  "Leggo!"

STOP THE PRESSES!  Just had a visit from the oncologist.  My blood culture has come back positive for E. coli which probably "crossed my gut" into my bloodstream due to my severe mucositis.  The good news is that E. coli is very responsive to the many antibiotics that I have been on since late Saturday and that it is probable that today's blood culture will come back negative.