De-accessing Day

Friday - July 20, 2012

Fourteen days is my new record for having my port accessed - a 3/4 inch needle inserted into the port, gauze and bandages taped in place to cushion the needle, aquaguard secured to protect the entire site, and tubing hanging 6 inches down my collarbone.  [NOTE: educational / illustrative photo considered but then decided against.  You're welcome, folks.]  You get used to anything after a while and after two weeks I hardly notice this medical accessory.  Yes, I continue to protect myself with a pillow when Baxter and Sadie swarm me on the couch for cuddles and, yes, I continue to have a recurring nightmare of jerking a tube and inadvertently de-accessing my port (read:  ripping out).  During my first few days of hospitalization and living with a port in mid-May, I mentioned this isn't-it-a-silly-worry "rip out" scenario to my RN and she replied,  "Oh, it happens."  Yikes!  Let's just say that I am VERY protective of my port.  Whether negotiating my way around a hospital room as I push my chemo-laden pump and pole or redirecting my intensely-loving hounds to my (unencumbered) left side for kisses and strokes, I am keenly aware of my tubing, its slack, and the potential tension on my valued (but still creeping-me-out a bit) port.  One more IV antibiotic infusion late this morning before the home health care RN arrives to de-access me.  Then - joy! - two and a half days of freedom!  I can shower at will!  So ... a new record:  I am hopeful that this fourteen day mark of port access is not soon equaled or surpassed!

This morning my foot pain has definitely lessened.  The timing is consistent with the last interval between my even and odd chemo protocols; halfway through that first odd cycle, the foot pain tapered off.  I have taken the advise of a Bone Marrow Transplant (BMT) unit physician (and then actualized by Carolyn) who suggested Bag Balm to relieve this neuropathy.  I have been applying it regularly even when my right foot was too sore to touch without pain.  Who knows if it has hastened the timeline but my skin is certainly benefiting!

To prepare for our Monday afternoon consultation with the BMT team, I have been entering previously-avoided internet sites.  All in all, I prefer to keep clear of any generalities about survival rates and years.  These numbers are aggregates and every case is individual.  For example, stage IV but with clean bone marrow?  That factor is not necessarily reflected in the numbers.  Nonetheless, this morning I steeled myself, revisited the International Prognostic Index breakdown, and worked through myriad articles discussing the determining factors for a BMT.  Educating yourself is always critical BUT it is not always easy.  My goal is to be conversant and knowledgeable so we can fully understand and respond intelligently during our (two and a half hour!) consultation on Monday.  We need to advocate and inquire with a strong knowledge base.